What interested me in taking part in the focus group?

As a carer, I was experiencing frustration and barriers being able to access the care my family member needed particularly in primary care.

I wanted to get involved in being able to change this. I had tried different approaches such as complaining and offering feedback, only to be told - these are the systems health care professionals are working in. I realised there was too much bureaucracy to navigate and each department had its own procedures and guidelines.

A voice

I came across the Patient Association in a web search and was full of excitement at the prospect of finding a voice for patients and carers, signing up as a member. I then received the weekly e-newsletter and applied to get involved in a focus group on ‘Embedding Patient Partnership’ and was selected.

During the focus group Sarah (Sarah Tilsed, Head of Patient Partnership) showed empathy and listened to our experiences and the feedback we gave on how things could be improved from the patient’s perspective in partnership working. The context of the discussion was around the six principles in embedding patient partnership.

I found the session informal and a safe, a non-objective place to be able to talk openly about the experiences of patients and carers. Although it was emotional at times, it was also powerful being able to have a voice.

For me it became a form of peer support and a place where our experiences were validated. Although the session began with frustration at the systems and the lack of patient decision making, it ended with suggestions of how things could be improved in small steps.

I will focus on one of the principles.

Patients are treated as equals, with their views recognized as equally valid and having an equal say in decisions. 

This for me is the foundation between patients and healthcare professionals because when patients are involved in the decision making process, they take greater responsibility for their own health care needs and will continue treatment.

But too often the healthcare professional has limited time to actively listen to what patients are saying, they may be trying to skim read the patient notes on the computer, missing what is being said and missing the facial expressions and body language of the patient.

They may be checking the clock, making sure there is no over running into another patient’s time. The patient might be handed a prescription or referred to another department without being able to ask questions on why this treatment was offered, was it a cheaper option, were there any side effects, were there other options, should the patient have had time to think about the treatment in an informed way through a conversation rather than being directed to a website?

If patients are to be able to practice shared decision making and for it to be successful, the power imbalance must be realigned. Traditionally healthcare professionals, with their specialist knowledge, have decided on the treatment pathway. But where patients are involved in shared decision making, those patients are likely to have better health outcomes and adherence to treatment, with improved patient safety.

My hopes for the principles

Call me optimistic but I can see the patient partnership with healthcare professionals developing, because patients are getting involved in research but also learning about their own health conditions from a wide range of patient sources.

As one patient in the focus group framed it: “The GP may have years of specialist book knowledge, but I am the one that knows my body.”

Samina Begum