Crohn’s & Colitis Patients Should Be Medically Exempt
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Crohn’s & Colitis should be listed as a condition eligible for medical exemption.
My name is Amber. I’m a 26 year old female who suffers with Crohn’s disease in my small bowel and perianal area.
Crohn’s Disease is one of the two main forms of Inflammatory Bowel Disease (IBD). The other main form of IBD is a condition known as Ulcerative Colitis. Crohn’s is sometimes described as a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission) as well as times when symptoms are more active (relapses or flare-ups). In many people the disease runs a benign course with few flare-ups, while other people may have more severe disease. Crohn’s & Colitis are not infectious, but can affect anybody at any stage in their life.
At present there is no cure for Crohn’s or Colitis, but drugs, and sometimes surgery, can give long periods of relief from symptoms.
Living with a chronic condition is physically, mentally and emotionally draining. And knowing you’re going to have to take some form of medication for the rest of your life is a tough blow. But that medication doesn’t come free, it doesn’t even come cheap. So not only do you have to comprehend living the rest of your life with a condition that has no cure but you have to pay for it too! On average I can spend anywhere between £20-£50+ a month on medication. As an example, I have to take azathioprine tablets every single day. Each prescription is 28 days, which means I need to get a prescription every 3 weeks to ensure I have my next one ready before my current one runs out. This means the minimum spent in a month is £18.30 (£9.15 per prescription). However for someone who suffers with recurrent fistulas and perianal abscesses which require surgery, I also have to be on antibiotics regularly. An average course of antibiotics can be from 5 days to 2 weeks. This year alone I’ve had 6 courses of antibiotics for 5 days at a time. 3 of these courses have been over 3 continuous weeks, but rather than paying for 1 prescription to cover the entirety, I had to pay on 3 separate occasions as as soon as I stopped a course my condition deteriorated very quickly so doctors advised to re-start them. These 6 courses of antibiotics alone in 2020 have cost me £54.90. In the past I’ve also had to pay for steroids and iron tablets due to losing so much blood that I became anaemic.
In the UK you can apply for a Prescription prepayment certificate which cost £29.65 for 3 months or £105.90 for 12 months, which works out cheaper than paying for individual prescriptions. But even so, that £29.65 for 3 months or £105.90 a year doesn’t cover the cost of the sanitary towels and bags that I have to use on a daily basis due to having a seton inserted through my fistula which leaks fluids 24/7. It doesn’t cover the cost for the handheld bidet I had to purchase to be able to keep my perianal area clean after every bowel movement. It doesn’t cover the cost of the special shower gels I have to use when washing. It doesn’t cover the cost of the special cushions I have to sit on to even try and get slightly comfortable. It doesn’t cover the cost of the new loose fitting clothes and underwear I’ve had to purchase to help protect the dressings and find some form of comfort when bed bound or trying to live a normal life. A PPC just isn’t enough for someone with a lifelong condition. It should be free.
Not only should Crohn’s & Colitis be covered under the medical exemption certificate for the need to pay for medication to help control the symptoms, but because these two conditions can also lead to other medical problems. To name a few Crohn’s can cause problems with the joints, bones, skin, eyes, liver and kidneys and blood. So imagine having to pay for medication or remedies to help with those too. It all adds up!
Did I mention living with a lifelong chronic condition also means that you may have to have periods of time off work whilst in a flare? Or if it’s really bad, you may not be able to work at all? So how is it fair that whilst earning less money or perhaps no money at all we still have to pay for our medication? The medication that isn’t optional but crucial for helping us get through day to day life. I have the answer to that, it’s NOT!
IBD affects so much more than the bowel. It has even affected my mental health at times where I’ve been unable to work, unable to socialise with friends, unable to leave the house, unable to walk more than a few steps, unable to sit down, unable to lay in bed without being in pain, unable to shower or wash my hair because I’m too exhausted, unable to do anything and feeling worthless. During times like these when you’re unable to get to the pharmacy to pay for your own prescriptions and a family member or friend has to collect and pay for it on your behalf can not only be embarrassing but if they insist on you not giving them the money for it it can cause you to feel stressed and anxious. Stress and anxiety are two of the biggest factors in causing an IBD flare or prolonging one. All of that could be avoided and made much easier with a medical exemption certificate as then whoever collects prescriptions can simply show the card and collect it for free.
I therefore ask for Crohn’s & Colitis to be listed as medical conditions on a medical exemption certificate so that patients living with these lifelong conditions never have to worry about not being able to have access to medications they need ever again.
Crohn’s and Colitis are for life, not just for Christmas.
Amber Parris - Crohn’s Disease sufferer.
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