Our patients, ourselves

I’m very choosy with the conferences that I attend, all too often they consist of dry presentations delivered without enthusiasm, and all the time the delegates sit there, surreptitiously checking their phones or, like me, thinking about the work they could be doing.

Tuesday was different.  So different.  I attended the Patient Experience Insight conference in Manchester (organised impeccably, by the way, by Healthcare Conferences UK); the conference opened with a presentation by a gentleman called Tommy Whitelaw.  Tommy’s presentation was probably the most genuine, heartfelt and honest that I’ve ever heard.  He spoke of his experiences in caring for his mother, Joan, who had vascular dementia and his words, spoken with total passion, moved most of us to tears.

So this made me think about patients, service users and carers – my own experiences in caring for them, working alongside them and how they have shaped and influenced my work.  Tommy’s words also resonated with me on a different level – the isolation, desperation and sheer heartbreak of being a carer for someone you love.  Although I had a lifelong background in health and fitness, I actually moved into healthcare initially in a voluntary capacity as a member of a Patient and Public Involvement Group.  I had been a full time “informal” carer for my mother, who had colon cancer with secondary tumours in her oesophagus.   As with Tommy and Joan, my mum and I had a long journey of isolation, despair, pain and bewilderment punctuated by visits from our GP or District Nurse.  Somehow, I’m still not sure how, we fell through the net when it came to real, structured support and care.  So I had to beg a neighbour to sit with mum while I collected her prescription and, towards the end, I simply did not sleep – I didn’t dare close my eyes in case my mum needed something.

After an experience like that you can do one of two things – either implode or decide to contribute, to actually strive to make a difference.  That’s the route I’ve chosen ever since.  The hallmark of my work has been patient and carer involvement, from writing patient facing information to designing integrated services, I ensure that the patient and carer have a voice.  Now, after a long time in healthcare, I believe I am witnessing a real change where patients, service users and carers are genuine partners in the design of healthcare in the UK.  Gradually, I am seeing targets and spreadsheets and funding being counterbalanced by experiences, and conversations and compassion.

So here’s the thing, now we need to look at the detail of how we view those we care for.  Our patients, first and foremost, are individuals – the mother, sister, daughter, best friend not the colon cancer, the dementia, the MS sufferer, the paraplegic.  They are defined not by their diagnosis but by the years of working living, loving and giving.  And how we label and perceive our patients – the words we use – can have a lasting impact.  Tommy gave a great example; someone had written on his mum’s notes that she was “challenging”.  Challenging.  Think about that word.  We use it now because we feel it sounds better than “difficult” “problem” or “demanding” but it’s not exactly a positive word, is it?  What are your expectations on reading that word?  You would expect to be challenged.  Tommy’s mum wasn’t challenging, she was a frightened woman.  Similarly, our patients, carers and service users who display aggression or frustration are all too often actually scared, lost or bewildered.

Our healthcare professionals do an incredible job in one of the finest professions that I believe exists.  Never underestimate the importance of the small ways that they show kindness and compassion.  So, in the changing environment that Brexit will bring, let’s give our healthcare professionals the space they need to care, to ask our patients and carers what matters to them, the time to truly listen to what matters and to DO what matters.