Can we champion Patient Experience during a pandemic?

I had previously read about the effects of a pandemic. However I had never contemplated my personal experience of living, feeling and working in a pandemic. Nor had I considered my understanding or contemplation of what it all means, navigating the restrictions, the ever-changing guidance and or the emotions provoked. It has been life changing for me.  When I have needed to be at my most resilient, I have found that some of my supporting pillars of resilience have been disrupted.  My family and social networks are less able to support me because of the mandated social distancing and equally the stability offered by my working life has been threatened. There is no doubt that the COVID-19 pandemic has challenged me and all of us all personally and professionally but perhaps most particularly those of us who are working in the ‘essential services’, during this time.

I had just taken on a new post as lead nurse for patient experience at West Hertfordshire Hospitals NHS Trust, as the COVID-19 pandemic began its ravage on all of our lives.  We were rightly challenged to continue to meet our trust vision: ‘Delivering the best care for every patient, every day’.  Much of our endeavours were similar to our colleagues in other NHS Trusts, enabling business continuity and surge plans, all directed toward enabling resource and capacity in our health and social care services, mitigating against any potential harm and ultimately supporting our staff and keeping our patients safe. The pressures on our teams have been incredulous yet we have enabled change at pace, in creative and innovative ways.  We have worked together to solve problems and overcome hurdles as rapidly as they presented themselves.  

We appreciate the good patient experience is seen as a central outcome for the NHS.  However does patient experience always have parity with clinical effectiveness and safety? Is this more or less true in a pandemic situation? I was speaking to third year students last week about patient experience and what to expect. They have chosen to come into our NHS on extended placement, to support our teams during this pandemic. I was struck as I spoke to them, by what feels familiar and what feels different in patient experience. We no longer collect the Family and Friends Test, which was a barometer of compassionate care and our National Inpatient Surveys are also temporarily suspended. So how can we assure ourselves that we are delivering compassionate care? Our Patient Advisory & Liaison Service (PALS) and complaints systems are still active, however are people less likely to use these systems when our NHS is under fire? I have set up, at pace, as have colleagues in other trusts,  a Family Liaison Hub as an extension of the PALS services, to mitigate the visiting restrictions and provide a line of communication between families and our services and their loved ones. There is no doubt that this is a positive and reactive response to improving patient experience at this time.  

I would assert that learning from what patients think about the care they have received is even more important in challenging times.   A difficult part of the pandemic journey is dealing with very sick patients, with death, with inadequate goodbyes.   Ironically the social distancing control measures relate to how we show our love and care to each other and our instincts are to be together.  However the people who give patients the most comfort except in some circumstances are unable to as their ability to offer this, is minimised and constrained by restricted visiting policies and the infection control and prevention guidance to wear personalised protective equipment (PPE) we need to wear to protect ourselves.

In my trust, as in others across our country, our staff have made mammoth efforts to enable compassionate care.  I would argue that we are listening and enabling more real time feedback, resulting in issues being resolved, more timely.  The little things which are important to patients are being considered and acted upon.   Some examples of these include, encouraging mobile phone contact and making sure our families were given a leaflet to encourage them to provide a phone and pursue this contact.  Feedback via our visitor’s line made us aware that some of these phones were not plugged in or accessible to patients so we were able to highlight this via our family liaison service to the ward areas.  Another example of timely feedback, was from a matron using the iPad call service, where a family was able to pray with their loved one as she had understood that this was what made this patient feel more calm and less distressed.  

We have also been able to maintain contact with families by providing special messages and photographs via our letters to a loved one – these updates have been wonderful and it has been emotive to read some of the messages especially with news of children and photos in happier times. All of these are examples of timely and responsive compassionate care.

We have also been mindful of the experience for patients in the COVID isolation areas. People say goodbye to their relatives and enter the grimness of the isolation area with the brigade of masked and gowned health care team. The staff teams suggested and enabled having pictures on laminated cards or and stickers to offer a solace of reality, of normality, of humanity.  This I would argue is a caring and responsive action to the imposed dehumanisation and perhaps reduces some of the trauma that may be created by the unnatural setting of the isolation areas.  

Bereavement is always a difficult time and the pandemic has added further challenges and pain at this time. The ‘two hearts’ project established by one of our ward sisters, where patients who are sadly dying, hold a heart in their hand in their last moments.  This is one of a pair, of two hearts, the other is then delivered by post to their relative in a beautiful card designed by the team.  This enables a physical contact with that person – a connection, an important connection with relatives during and after this time.

I am mindful and in awe of the challenges and support our front line staff provide each day but I also acknowledge the patient affairs and the spiritual and pastoral teams whose team members are working incredibly hard and are listening to and remodelling their service in a responsive way to meet the needs of patients and families.    Part of our patient experience staff surge plan to patient affairs has been to redeploy staff from services temporarily suspended.  The exceptional counselling role that nurses from our dermatology area, who ironically had previously worked in bereavement services, have provided to bereaved families has been exceptional.  This was not a role we had anticipated but the team and the relatives who call this service have highlighted it as a valuable resource for families. 

So what have we, what have I as a patient experience lead, learnt from this experience?  Can I reflect on what is or was valuable, as we go into the recovery phase of this pandemic? I realise, to know this, I need to talk to and listen to staff and families.   We have a host of data from our visitors and relatives liaison line to interrogate and learn from. This needs to be translated for ease of use in quality improvement and assurance activity. I am prompted to reflect on new approaches and innovations and ask in what other ways can we use our newly donated iPads to benefit patient experience?  We have had preliminary discussions with teams about the value of the relative’s liaison role- would this be a useful role going forward?   We have Clinical Nurse Specialists who provide this for some patients but perhaps it would be valuable for all patients?

These times are exceptional, but the COVID-19 pandemic has shown us in healthcare, how capable we are, how we have proudly and radically responded to challenges in patient experience and initiated change at pace, despite unstainable pressures. I applaud my colleagues on the front line and I remember the colleagues we have lost from our NHS family.