NHS Cluster Headaches page updates

Hello.



New member here. I will post an intro soon to give my CH background. In the meantime, I wanted to raise something concerning that I've noticed about the Cluster Headaches page on the NHS website. For context, I am a digital marketer and content specialist in the charity healthcare sector, and I have lived experience of CH, having been diagnosed over 10 years ago.



The NHS Cluster Headaches information page has been updated recently. I think this community will be interested to understand these changes. My feeling is that some of the new wording will have a detrimental impact on the public's already limited understanding of cluster headaches, making life significantly harder for people living with the condition. I'd like to propose that OUCH make representations to the NHS to this effect.



Background

Here is the current version of the page. It was lasted updated on 18 August 2023.

https://www.nhs.uk/conditions/cluster-headaches/ 



As you'll be aware, this page has a strong search ranking and is the first result that most people in the UK will find when they type 'Cluster headaches' into a search engine. Since the NHS is such a trusted source, Google also pulls information from this page for desktop search features such as Featured snippets and FAQ rich results. I have attached screen grabs of these features to illustrate what I mean.



Now compare this to the last version of the page, which we can see archived by the Wayback Machine on 31 July 2023:

https://web.archive.org/web/20230731142350/https://www.nhs.uk/conditions/cluster-headaches/



Key changes

1. 'Excruciating' => 'Severe'
   • I can understand why the word 'excruciating' might be considered to be a subjective or even unscientific term. But as someone who has experienced this pain, I'm not convinced that 'severe' does it justice. Especially when you compare this opening sentence to the strength of language used by the Migraine Trust, whose web page on CH opens with the subheading 'one of the most painful conditions someone can have'.
2. Addition of assertion that 'they're not usually serious'.
   • Umm. Not serious?? Really??!! Clearly it's a difficult balance to strike when you're seeking to reassure people who have been recently diagnosed while also making it clear that this is a painful condition. But I feel that in this instance the scales have been completely tipped the wrong way. As a patient, I feel this sentence utterly minimises my experience. And as someone who frequently despairs at the persistent lack of understanding of the severity of my condition from friends, family, colleagues and healthcare practitioners ('oh, you've got a bit of a headache?'), it infuriates me to think that now the first thing these people will read when they look it up is that it's not serious. In most cases, this will be the ONLY thing they read - very few people scan past the first paragraph of information content online.
3. Deletion of explanatory content about OUCH's service provision, including phone number and email address.
   • This is a real shame and I'll be interested to know if this has resulted in a noticeable dip in referrals to the website and helpline.

I haven't analysed all the changes forensically, just pulled out some key points. Others may care to look in more detail and see what else has been updated.



In my experience, the NHS is receptive to sensitive requests from partner organisations, especially if they are balanced, backed up with clinical evidence and include the voice of lived experience. Is this something OUCH would be willing and able to do?



With kind thanks for your patience if you've read this far, and apologies in advance if it's presumptuous of me to suggest action. But I do feel strongly that the cumulative impact of the changes I've outlined represents a material threat to the charitable aims of OUCH in improving awareness and understanding of the condition among the general public and practitioners.



I'd be happy to provide any further help or input as required.

[Edit: screengrabs wouldn't attach, sorry!]