Rachel Power, CEO, Patients’ Association

The question of what the best treatment for a patient might be is not one that a doctor can answer alone. Patients have understanding and insight for which there is no substitute. This might relate to their own circumstances and preferences, and how different treatment options might fit in with other aspects of their health, or life more broadly.


So, for instance, a patient can bring a view on whether their aim is to minimise pain and discomfort, or whether they would rather tolerate a measure of pain or discomfort in order to continue to be able to do certain activities. This is where shared decision making becomes essential: the right outcome for the patient can only be achieved through a meaningful discussion between patient and clinician.


It is therefore essential for doctors to have these discussions with patients. A narrow, technical assessment of what is ‘best’ in a strictly clinical sense will not necessarily produce the results that the patient wants. Many patients value and respect the expertise of their clinicians and enjoying the confidence that results from that makes a positive difference to how they experience care. But, it must not be a licence for ‘doctor knows best’ and input from patients must be recognised as an essential ingredient of effective healthcare.


Fortunately, this is increasingly widely acknowledged. The NHS Choices Framework does commit the healthcare system to, ‘empowering patients to shape and manage their own health and care’ and in a welcome step towards making shared decision making more like business as usual, NICE is publishing new guidelines this summer.


The importance of this sort of discussion when treatment options are decided and recognising what matters to patients, is why we at the Patients’ Association feel it is important not to set overly restrictive limits on when a treatment should be made available, based on a narrowly clinical assessment of its efficacy.


I was pleased we were able to work with the Academy of Medical Royal Colleges on the patient information leaflets which follow the well known BRAN template. An acronym for the Benefits, Risks, Alternatives to treatment and crucially, what happens if you do Nothing? This offers an ideal opportunity to structure a conversation with a doctor to reach a decision that really is shared.


We look forward to continued close working with the Academy on EBI.