UK Disability Benefit - Special Note for IIH Patients

All about benefits and allowances that may be available to people with disabilities including resources for Disability Living Allowance (DLA). This is a READ ONLY section of the site. If you have any useful links you think should be in this section, contact us and let us know.

Moderators: Moderators, Trustees

Forum rules
This section of the forum is provided as a resource for information regarding many aspects of illness, disability, and health issues, as well as advice services, benefits information, and other aspects of life that having IIH and disability can impact upon.

Many of the links and organisations listed in this section of the forum refer to "disability". Not everyone who has IIH will be classified as disabled - under the DDA (Disability Discrimination Act) a disabled person is defined as "someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities". Equally, some people who do meet the DDA's definition of disability may not be comfortable with being described as disabled. We use the word "disability" here, except where the word disability has a specific meaning, such as in relation to the DDA, as a shorthand for "disabilities and long term health conditions" - it's a lot quicker to type 'disability' or 'disablities' rather than "disabilities and long term health conditions" every time!

This section of the forum is READ ONLY, i.e. you can't reply to the posted topics. If have any comments on any of the posted links in this section, please use the appropriate area of the "discussion" area of the forums.

For some areas where there are a lot of different links, we've set up a "child board" to collect all of the resources on that subject together.

Know of a site or resource you think other forum members ought to know about? Let one of the Administrators or Moderators know - Celestia, Michelle, Didles, Emma.x, Katie30, or Missy - and we'll check the site out and decide if it's suitable to be included on this board.

As stated in our Terms of Service, which you'll find a link for at the very bottom of each page of the forum, we aren't responsible for the content of other sites, and our inclusion of hyperlinks to such websites does not imply any endorsement of views, statements or information contained in such websites.

As the majority of our members are from the UK, most of the information in this section is UK based, and about UK welfare benefits, advice services etc. We recognise though that we do get visitors here and indeed have members from all over the world. If you're not UK based, and you have links specific to your own country that you think would benefit others, please do let us know and we're happy to post links for other countries if you feel they would help others. Please do let us know if you have any links you'd like to share by contacting one of our Administrators or Moderators.

We do try and periodically check the links to make sure they're still pointing at the right place, that sites haven't moved, or disappeared, but if you find any dead links, please do let one of the Administrators or Moderators know by posting in the "Feedback, Comments, and Technical Queries" board so that we can updated the post where necessary.
Posts: 157
Joined: Fri Feb 17, 2017 9:04 am

UK Disability Benefit - Special Note for IIH Patients

Post by iih » Fri Feb 24, 2017 11:30 am


This is a message to all those people who are entitled to claim UK disability benefits and who have been diagnosed with IIH – Idiopathic Intracranial Hypertension.

We have found that a number of people have been turned down for disability benefits because DWP and/or contracted medical organisations have misunderstood the word ‘hypertension’ as referring to high blood pressure and not high cerebrospinal fluid pressure.

The Department for Work and Pensions have now rectified their omission and apologised to the Chair of IIH UK - and IIH is listed by DWP as condition number G99 on their database

The DWP office responsible for listing diseases has asked IIH UK to tell all of those who have been turned down for disability benefits on whatever grounds to re-apply for benefits.

You should:

Find the letter from DWP office saying you could NOT have the benefit and write to the address on that letter as follows:


I was previously turned down for disability benefits because the Idiopathic Intracranial Hypertension that I suffer from was not listed by DWP. This omission has been rectified and DWP has asked me to re-apply.

My symptoms are:

List symptoms

I understand my application will now judged strictly on the basis of the medical evidence of the effect on me physically and mentally of Idiopathic Intracranial Hypertension.


This information is correct as at July 2012


Who is online

Users browsing this forum: No registered users and 1 guest