As a health community, we emphasise the importance of intervening before a crisis, delivering person-centred care and evidence-based policy making. There are good reasons for these approaches – they deliver more positive patient outcomes.
A recent consultation by NHS England on ‘low value medicines’ appears to directly challenge these tenets, without detailed scrutiny of the implications for patients and their well-being.
Why is this concerning so many people living with Inflammatory Bowel Disease?
More commonly known as Crohn’s Disease and Ulcerative Colitis, Inflammatory Bowel Disease is an incurable and lifelong condition. Symptoms include acute abdominal pain, weight loss, diarrhoea and severe fatigue; many will experience the immediate need to empty their bowels multiple times during the day.
These symptoms can be embarrassing, debilitating and distressing, often leading patients to ‘limit’ their lives by reducing how much they leave the house, socialise or work.
The upside is that for many, these symptoms can be managed, or at least alleviated, by medicines such as anti-diarrhoeal medication, painkillers and constipation medicines.
Access to vital medications under threat
The proposed guidelines, if implemented, would act to restrict a number of medications on prescription for conditions such as diarrhoea, constipation and mouth ulcers, when these are used for one-off use, self-limiting conditions and the management of long-term conditions.
The potential implications for people with long-term conditions are underplayed within the consultation document and have received little to no attention in the public debate.
The guidelines potentially introduce charges to groups of patients that currently don’t pay for their medication, including children and young people, those medically exempt, on a low income or able to manage the cost through purchasing a Prescription Prepayment Certificate.
As outlined in the National Voices position statement, this challenges the principle of access free at the point of use, without any kind of parliamentary debate.
A costly decision for people with long-term conditions
Working age people with long-term conditions are more likely to have below average incomes because of the impact their condition has on their employment options.
That they could also have to bear the additional cost for the often significant quantities of medications needed to manage their ongoing symptoms, as well as the bulk of the burden of prescription charges in England, would be particularly unfair and a false economy.
“I take 8 loperamide (anti-diarrhoeal) a day minimum and there is no way I could afford to pay the over the counter prices. Stopping these medicines being available would mean I would not be able to live my life and be a prisoner in my own home.”
- Hannah, 36, Crohn’s Disease
It is not clear from the consultation document how these proposals will affect patient outcomes or patient safety. Furthermore, the impact assessment offered does not consider the effects on medicine adherence or impact on wider health services.
Our own research and that of the Prescription Charges Coalition into the effects of charging people with long-term conditions for medications found that the cost of prescriptions was preventing people from taking or picking up their necessary medication.
The public is being asked to consider proposals with very little information provided, other than repeated messaging that ‘low value medicines’ are unaffordable.
While we understand that the NHS is under significant pressures, we must as a community ensure there is the appropriate scrutiny and understanding of the implications of this proposal on patients and their wellbeing before we go any further with this fundamental policy shift.