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Issue with NHS website

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#1 Wed, 29/05/2024 - 18:32
EllenWS10
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Issue with NHS website

Hi All, 

As a member I have read lots of your forum discussions, but have not posted before.  I was diagnosed with my first cluster headache 2019 and to date still coming up against barrier after barrier, from injections, being refused PIP at appeal stage now twice, deciding to go private and paying to see a Cluster Headache neurologist specialist, my GP refusing to prescribe melatonin and home oxygen on NHS despite being requested to by said specialist...but the purpose of me being brave and posting is not to share my woes because you all have suffered the same or similar problems as myself.  

My reasons are is to question whether anyone else takes umbrage at the information about Cluster Headaches on the NHS website? The reason this has been "bugging" me for a while is I have those who are supposed to be "professionals", such as tribunal panels for PIP saying things like they have never heard of the condition, so have read on the NHS website.  It is exacerbating as I try to explain that there are more reliable sources of information about Cluster Headaches like Ouch UK, but I get response such as the NHS is a trusted source of information and it says "Cluster Headaches aren't usually serious"...I know what planet are they on...

I was wondering as an organisation if there is anyway contact can be made with the authors of these webpages as they woefully trivialise Cluster Headaches and what sufferers and their family / friends / support networks actually experience.  
 

I would love to know what others think and sorry if I am posting about something that has been posted before and I have missed it.  
 

Many thanks for reading. 

Ellen WS10

Thu, 30/05/2024 - 10:24
Lotte
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I contacted them, as a private person, using their "contact the NHS website team" form, there's a link at the bottom of the NHS conditions webpage. I sent a message in January, received a response in April saying: "Your feedback has been shared with the content team and they will be reviewing the issue soon." Obviously that's not good enough as it really didn't give a clue as to what will change or when it'll happen.

As it stands the NHS information just isn't good enough.

 

Sat, 01/06/2024 - 01:26
EllenWS10
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Thank you for the reply Lotte and I am going to contact the NHS website team too as you would hope that multiple contacts would help them to realise that they need to review and update the information, particularly the comment about their supposed notion that CHs are not serious.  

Ellen WS10

Fri, 21/06/2024 - 22:34
EllenWS10
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Hi all, just wanted to share that the NHS website has been updated and it now says how it can have a real impact on our lives.  Most importantly the line has been removed that says "Cluster Headaches aren't usually serious".  I am really happy as this has been bugging me for ages. 

Ellen WS10

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