What information reflects my Interstitial Cystitis

There are times that you will be required to gather evidence to reflect your condition and its impact on your abilities. When bringing any kind of disability application, claim, case, defence or admission forward, you will be required to show the way that Interstitial Cystitis and any other relevant conditions meet this requirement. These documents can help you in your Personal Independence Payment application, Disability or Blue badge applications, depending on what is relevant for your circumstance. You can reflect the impact of your condition in many ways. Below are some suggestions:

  • Medical records - In gathering your medical records relating to the condition, you can identify when the issue was diagnosed and parts of the impact that were recorded on your medical files. If you require records in the UK, you are able to contact your medical practitioners and request Subject Access; Providing your name, contact details and which information you require under the General Data Protection Regulation (you can ask for any record relating to Interstitial Cystitis or investigation through the lead up to diagnosis). In the USA, you are able to request the same under the The Health Information Portability and Accountability Act.

  • Recent repeat prescription list - It is likely you are on medication for this condition, which means your prescription will identify the recurring medication. Next time you order a prescription, you should receive a copy of your repeat prescriptions. If you do not, then you are able to get in touch with your medical professional to ask for a copy of this. 

  • A letter from your medical professional(s) - If you have had contact with a specialist consultant in regards to your condition, such as a Urologist or even a General Practitioner, then you are able to submit a request asking for a letter that confirms your diagnosis. The only information that can be contained in this letter is that which can be found on your medical record, so if something is not recorded specifically, it will not be added. 

  • Information Fact sheets from organisations - There are some fabulous teams working towards a brighter future for those with IC, which is heartwarming! A few provide valuable information and even fact sheets. Those that I suggest are: Bladder & Bowel Community (They also offer home delivery for prescriptions!), IC-Help, and Bladder Health UK.

  • Blue Badge - If you have a chronic issue that affects your mobility or causes urgent issues and debilitating day to day symptoms, then you may find in the UK that you are entitled to a Blue Badge (You can apply through your local council). If you have a blue badge, you will be able to take copies of this for future reference or submit it to validate your cause also.​

  • Scientific Studies - There are various studies that can be referenced providing it is a trusted source. You can look into recent scientific research into the condition which may present further information to corroborate what the medical professionals have confirmed about your condition. You can find studies here.

  • Care / Supporting Letter - If you are in receipt of help from any care worker, support or social workers, you may find it beneficial to ask them to confirm their involvement with you in writing, to present alongside your argument.

  • Family and Associate Letters - Family, friends or people you have known for long enough to see how your condition effects you, may be willing to put their version of whatever has been witnessed, in writing. This is impacting in terms of your condition and your character, which may be accepted to reflect your condition.