The importance of continuity: four personal viewpoints

Please note that views expressed in guest articles on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.

The following brief accounts are from four women with complex long-term medical conditions, who I approached to ask if they would write something about their experience of continuity of GP care.

While their real names have been changed and I have only been fortunate enough to meet one of them in person, we all ‘know’ one another from things we have shared online, and we all care about continuity of care from our own reasons. Continuity for all of us is about trust and safety and knowing one another as people as well as by our idiosyncratic physiology. This makes us feel safe without falling into a trap of complacency, because we are aware of the subtle signs when things are awry and need action, and when being present is enough.

As Rachel and Jasmin say, it can be life-saving. Kathryn reminds us that continuity is not just about one patient and one GP, but depends on practice culture and teamwork. What it means to be ‘me’ is an ancient philosophic question that Liz leaves hanging, but the implication is that a true and healthy self is a social self, cared about and respected by others.

Rachel

“You’re going to have to trust me” said Dr A, as he took ownership of the inherited problems sorting out my care. Was it that obvious I didn’t trust this new doctor? I thought I hid my fear of humans.

I took a leap of faith and started disclosing traumas that caused my post-traumatic stress disorder. The world is a threat to me and Dr A evoked a new feeling in me – the feeling of safety. His attention deepened my trust, enabling me to say more. He is witness to all the injustice, suffering and suicidal pain. Of course, in his absence, other worthy GPs at the practice have stepped in and a trainee has given me exceptional care. But none of them were my GP.

The difference is time, history and depth of trust. Continuity is relational: a bond that can stretch far beyond surgery walls – far enough to the cliff edge I stood on, when Dr A’s old voicemail made me step back. His voice had connected me to all our previous contacts and humanity. With continuity came shared humanity. As Hippocrates said: “Wherever the art of medicine is loved, there is also a love of humanity.” It has truly been life-saving for me. 

Jasmin

It's easy to make the argument for continuity now that I have multiple unstable illnesses. My GP not only knows the complexity of balancing those conditions and their treatments against each other, she knows the complexity of balancing my physiology against my quality of life.

What I hadn't appreciated, until I needed it, was the value of having a GP who knew me before I became unwell. I had met my GP a couple of times for simple conditions – a rash, a chest infection – the kinds of things that could be framed as better dealt with by a different member of the primary care team. I distinctly remember her telling me she could give me a cream for my rash, but it was mostly for entertainment.

That tiny transaction – humour, respect, honesty – became crucial as I developed a life-threatening rare condition. That relationship saved my life. When A&E doctors thought I seemed ‘ok’, she could see the transformation from my healthy self. When each year brought a new life-changing diagnosis, I knew she could still see me. You can't put a value on that golden thread, and you don't know you need it until you do.

Kathryn

For the British Geriatrics Society recently, a geriatrician wrote about a lack of continuity of care for patients and the problems it presents in acute admissions. Complex needs, different on-take teams and bed moving creates distress for frail patients and there are medical risks of not knowing the whole patient. Not just medical information, but their social history.

This rang strong bells for me. I have complex co-morbidities – type 2 diabetes, with every complication going, but thankfully my renal function is good. I have type 2 respiratory failure, I am on lots of opioids for chronic pain and I have severe mental illness – a borderline personality disorder. Having had sepsis and osteomyelitis, I have lost a big toe. It’s understandable why I need continuity of care.

My GP practice is outstanding. We all get on. I am honest about symptom control and when I can’t take meds on time or juggle insulin. They ‘get’ that I self-fund libre as pricking my finger was a huge issue, and they were very supportive. I am given my preferred antibiotic (agreed with the consultant microbiologist who knows me well) when I ask. I never get refused any reasonable requests and phone calls are always returned the same day by a GP who knows me well. All GPs and reception staff have been briefed about the importance of continuity.

We have a good agreement with a preferred A&E that I’ll be medically accepted for review if I hit certain aspects that are worrying – my oxygen sats are normally 87-93%, but if they’re below 87% for more than 48 hours, I’m medically accepted without question and a GP refers me automatically on doing a home visit.

They ‘get’ my rapid cycling too.

I have a joint care plan with A&E and my GP to avoid unplanned attendances. This ensures streamlined care with a rapid response.

They ‘get’ me. 

Liz

When I was in the worst of my pain, during the darkest years of my experience, I was shuffled around to many different clinicians. The clinicians I saw early on I never saw again, and those I saw later never knew me from early on.

That mattered.

Over time I went from being a strong, fit firefighter who lifted heavy weights, who trained hard at work and at play, to being small, frail and weak. I was unrecognisable to myself, unrecognisable to people who knew me.

I was not, though, unrecognisable to the clinicians who saw me. They knew me only as the person before them, not the person I was before. They were not concerned about my drastic weight loss, the drastic changes in my appearance, my demeanour. Those changes simply didn’t exist for them.

I wasn’t seen.

Whoever I saw that day, that month, that year, didn’t know me. Didn't know my struggles, my losses, my worsening pain. Didn't know my suffering.

They saw me at one point in time, bereft of context, only knowing what was found in my file. A file that said things like ‘pleasant thin female' and a list of symptoms and failed treatments. A history of a pained hip. My story, my pain, me, was nowhere to be found.

Please note that views expressed in guest articles on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.