Patients with common conditions such as rheumatoid arthritis, psoriasis and ulcerative colitis are being switched to new medicines without receiving the support they need to understand any changes, or to monitor and manage side effects or other adverse consequences, a report by the Patients Association has found.

Our report raises clear concerns about patients’ experiences of being switched onto biosimilar medicines from their existing biologics.

We surveyed patients who use biologic medicines. Of these, a sub-set (69) had been switched to biosimilars, and more than one in three of these patients reported that they had not been consulted by their doctor prior to the change, despite this being a requirement according to NHS England guidelines¹.

In addition to more than a third of people (37%) not being consulted by their doctor prior to the change in medication, 60% of those patients did not receive training or home care support after they were provided with the new medication.

Conditions requiring treatment with biologic or biosimilar medications are complex and potentially life changing. Patients have often had long and painful journeys to get to a level of daily living that most people take for granted. Some patients still experience occasional bouts of ill health, but most value the medication that has generally improved their wellbeing over the years.

NHS England suggest that any decision to move to a biosimilar medicine should be made firstly on the basis of clinical judgement for individual patients, and secondly on the basis of the overall value proposition offered by individual medicines. The guidance also says that strong safeguards are required to ensure that patients who have responded well to existing medicine and who are then switched are closely monitored to ensure safety¹.

The NHS Constitution² sets out certain rights that patients using NHS services should expect. Patients have the right to be given clear information regarding their treatment including any risks, benefits, choices and alternatives. The Patients Association’s report shows that this is simply not happening for too many patients.

Rachel Power, Chief Executive of the Patients Association, said:

“All patients should expect to receive clear information about their treatment plan – particularly before or during a switch of medication, which can be a complex or difficult process. It’s clear from our report that too many patients are being let down at a time when they need to be supported.

“Many patients are extremely knowledgeable about their medications and can better manage their condition with the right support and guidance from clinicians. A new set of tools co-produced by patients and clinicians would go some way to resolving some of the issues described by patients, and enabling them to be more equal partners in their treatment plan and choice of medication.”

Feedback on the new medication by the respondents who had been switched was mixed. Some reported that the new medication was more difficult to administer and that it was less effective than the previous drugs. Others reported discomfort or rashes when injecting the medication, and concern was expressed about a lack of support from health staff, even when side effects occurred. However, some people had more positive experiences with the new medication, saying that the injection device was easier to use, and that the new drugs that a ‘had a very positive impact on daily life’.

Shared decision-making appears not to be a reality for many patients, and many people also find they received little information accompanying the change to a biosimilar medication. The possible adverse consequences were therefore unknown by many of the participants – and many could have suffered side effects and ill health as a result.  

The Patients Association wants reassurance that when patients are put on new medicines, good practice guidelines are followed in terms of patient-centred care.

References

1. NHSE Commissioning framework for biologic medicines (including biosimilar medicines) Sept 2017: https://www.england.nhs.uk/wp-content/uploads/2017/09/biosimilar-medicines-commissioning-framework.pdf
2. NHS Constitution: https://www.gov.uk/government/publications/the-nhs-constitution-for-england  

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