Robert reflects on the work undertaken by the PBC Foundation to ensure self management is recognised as central to good quality care of PBC.
It has been a long 10 years since the publication of the first Self Management Strategy for Scotland – Gaun Yersel!. The landscape has changed so much in that time with new understanding, new levels of autonomy becoming the norm and, of course, new challenges. Much of this new landscape came from the work of the strategy and the hard work that ensued thereafter.
At the PBC Foundation, we firmly believe the best patient is an informed patient and have striven for 22 years to inspire, empower, and enable anyone affected by PBC to gain, and keep, more control over their own life. The “Gaun Yersel” mentality is not always easy for patients to find or develop and it is up to us as a community to share best practice – successes (and failures) – and to share stories from other patients to show it can be done. By sharing these aspects, and more, we have been able to inspire an entire generation of patients to take and to exercise more control over their own lives.
This has been no mean feat. For us as an organisation, it has taken bravery, a boldness to go to new places, a willingness to make mistakes and to learn and grow and the realisation that autonomy and self-empowerment are two of the cornerstones of living with an incurable condition.
First off, we took ownership of the word “patient.” We know that patients are people too. So are doctors, nurses, academics and even most politicians. Each person involved has a certain expertise. Academics are the experts on researching a condition. Clinicians are the experts on treating a condition. Patients are experts in living with a condition.
Each has a place at the table when deciding the best way forward. Each has a knowledge base and experiential expertise in their own field and all of these *must* be incorporated into finding the solution. “Patient” is no longer a dirty word, or a word of weakness. Patients are experts: informed, experienced and engaged with, ultimately, the biggest invested interest and the most to gain from good practice.
Then we collaborated. We worked with organisations such as Talk Lipoedema, Epilepsy Scotland and Action for M.E. with partnerships forged through the ALLIANCE. We shared with other patients. We learned from other patients. We listened to carers. We listened to policy makers, clinicians, industry and academics to ensure we knew as much as possible. We were then able to make sure the patient voice was not only heard, but that it was genuinely listened to. We didn’t only raise the level of our voice… we raised the level of our argument.
Finally, we shared the tools needed for patients to have greater autonomy.
There is now widespread acceptance of the power of self management, be that emotional, psychological and physical. EASL (European Association for Study of the Liver) published guidelines in 2017 on care of PBC. Not only were we involved in reviewing those guidelines but there was an explicit recommendation that every single patient with PBC be signposted to a patient support organisation, with us being named as one example. You can see a lay version of that guideline here:
This document is now being widely used by patients in difficult conversations with their clinicians, when patients are fighting for the best available care for them.
They also use our app, in android and iOs, to self manage. With a symptom tracker, a mood tracker, a tests tracker incorporated plus our 80 page PBC Compendium, patients are taking greater and greater control of how they live every single day with PBC.
Of course there is much still to be done. Self management only comes when we take responsibility ourselves. The tools are there. The networks are there. The acceptance of the role of self management in clinical care is there, also. We just need to grasp it, and make it part of our own future.
But while we contemplate on what we can still do… let us take a moment to reflect on just how far we have come, and how we, together, have altered the landscape in which we live.