James Conlon: Patients shouldn’t have to worry about accessing medication because of prescribing cuts

NHS England recently held a consultation on which items should be routinely prescribed in primary care. From this consultation, which closed last month, NHS England will produce national guidance to make prescribing more cost effective. One of the key proposals that has been mooted for this consultation (and which some clinical commissioning groups are already rolling out) is to limit GPs’ prescribing of drugs that are available over the counter.

For people like myself with a chronic condition who rely on some of these medications, this is absolutely not possible.

When I was diagnosed back in 2012 with ulcerative colitis, I was completely unaware of the severity of the disease and how it would change my life. Naively, I thought that I would just be given a tablet, my symptoms would get better, and life would be back to how it was before I started feeling unwell. I have tried many medications; the majority have failed, and I have continued to be on them because my disease has not been under control in that time.

These medications range from biologic drugs that are focused on putting my disease into remission and easing my symptoms, to prescribed medication from my GP to deal with the extra symptoms these drugs struggle to control—alongside any other illnesses that may develop as a result of immunosuppressant drugs and biologic medications.

For example, I take loperamide to control symptoms of my ulcerative colitis. On some days I can take up to 10 loperamide a day—a dose that can quickly rack up to become a meaningful cost over a period of time. And even own brands of this drug can still be expensive.

I currently use the prescription prepayment certificate to pay for my prescriptions—most of these medications are on a repeat prescription—which means that I can pay a set amount to cover all my prescription costs for a three or 12 month period. While I am lucky enough to be able to work, it can still be incredibly expensive to continue to pay for something that is prescribed to help you.

Yet this proposal NHS England are considering, which would see medication like this become an over-the-counter product only, would strip away my option of accessing treatment more cheaply. It would also have a detrimental effect on my health and wellbeing—creating the constant worry of being able to afford the medication that I currently rely on. 

We shouldn’t have to live in fear of one day not being able to afford these medications we have been prescribed. They are prescribed for a reason—because we need them.

I would absolutely love to not have to always be on medication to ensure that I can live my everyday life: to be able to go to work and go on long journeys without relying continually on medication to enable me to do these things. Unfortunately, without medication, I wouldn’t be able to leave the house or work.

I am not using these medications for a minor illness that will disappear. I am suffering from a chronic lifelong condition, which at times can be completely debilitating and leave me in constant pain.

It is extremely important when patients are continually taking medication like this that we get the correct medical advice and are able to easily access a doctor to be able to discuss how we are feeling and possible side effects. This is integral to our health and wellbeing.

My plea to the NHS is to consider the guidelines they are drawing up and how many people this proposal will affect—not just physically but mentally. Patients shouldn’t have to worry about being able to readily access medications and if we are able to afford them.

James Conlon is a store manager in retail who has ulcerative colitis. He started the Toilet, Me and IBD campaign.

Competing interests: None declared.

  • Caroline Mabbs

    This is a very good article. Another med at issue is paracetamol. You can’t buy it in large enough quantities over the counter, you’d be at a different shop everyday like a meth head looking for Sudafed. As it happens, I go through a lot of Sudafed because biologics give me sinusitis. My GP used to prescribe it but not any more. Allergy tablets too.

  • Jo Flanagan

    As a Crohns sufferer I am given medication which is available over the counter but the dose I am on means I would have to purchase 3 packets per week. At Nearly £5 per box I would not be able to afford these as I am unable to work and am receiving benefits.

    While I can get the medication on prescription I can get it free and therefore able to control my health. If this stops I would have to stop 2 of my medications, as they are both available over the counter, and my health will suffer greatly both physically and mentally as I wouldn’t be able to get out of the house at all.

    It seems that the exercise is to save money at the expense of quality of life for those who have illnesses that require constant medication whose quality of life is already compromised by the illness itself

  • ben goldacre

    I’m a little puzzled by this, I thought the NHS England consultation was about specific treatments, which it listed, and it didn’t mention Loperamide that I’m aware of?

    Incidentally, on the specific things NHS E proposes people not using (on grounds of lack of effectiveness, or poor cost effectiveness), we have data and graphs showing the extent to which they’re being used, for any practice and CCG in the country. Here’s an example:

    https://openprescribing.net/ccg/99K/?tags=lowpriority