The challenges of navigating the healthcare system: David's story

Summary

We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, having to travel miles for appointments, miscommunication, diagnostic errors, or having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all".

These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes.

In this blog, David* shares his story about his elderly sister and a mix up with an urgent referral which led to a near miss.

Content

Background

My sister has cancer and she's got a diagnosis of dementia too. The cancer is very aggressive and it causes her a lot of pain. Her care team are managing her pain very well. Due to her age and frailty, chemotherapy was out of the question but she had surgery and it seemed to go well. She was having routine check ups post-op to monitor her.

An urgent referral

A few months later unfortunately the cancer came back and we got an urgent referral from her GP for her to see her consultant. So when within a couple of weeks we got an invite to the hospital for an appointment we assumed it was for her urgent cancer referral.

When we got to the appointment, neither the consultant or her advanced nurse practitioner team, who were all familiar with her diagnosis and history, were there. Instead there was a junior doctor on his own. He asked my sister how she had been since her surgery and was she doing well. When my sister said, well no, the tumour had grown significantly and we think the cancer had come back, he went white and rushed out of the room saying he needed to speak to someone else.

Communication issues

He came back and said my sister would need 20 days of successive radiotherapy in the hospital (which is at least a two-hour round trip). We had many questions we wanted to ask but he wasn’t able to answer them, and I was very concerned whether this was the right course of treatment for her. There were a number of issues—I had questions about how aggressive the cancer was, whether the cancer had spread elsewhere, whether this was palliative or curative treatment, what impact this would have on my sister’s health. Radiotherapy is harsh and my sister was physically very frail.

In the end, because I phoned the advanced nurse practitioner and explained what had happened and my concerns, we were invited back for another appointment, and a few days later we saw the consultant. On the advice given, my sister was told about the significant risks and unsuitability of radiotherapy because of her co-morbidities and she decided not to go ahead with the radiotherapy. This was a relief as I didn’t want her to have unnecessary treatment, especially treatment that would not address her cancer and make her remaining months painful and distressing.

The consultant was wonderful, and I’ve written him a lovely letter thanking him, but there has been a big communication issue here which could have led to a different outcome altogether.

A 'near miss'

The issues here, as I see them, are that the urgent referral got mixed up with the routine post-op appointment, which led to a doctor in training being placed in a situation for which he was untrained and unprepared in making significant treatment decisions. The advice he received and acted upon was from an unnamed consultant who didn’t even speak with or examine my sister.

There is also the fact that they didn’t have a conversation with my sister about her options and they just told her she needed the radiotherapy. This is not informed consent! If we hadn't been there with her and questioned it, would she have had that course of treatment, accepted the radiotherapy, even though it was completely unnecessary, which would have led to avoidable harm?

This really is a big ‘near miss’. What would have happened if she hadn’t had anyone there to intervene and advocate for her. She has absolute confidence in the health system but, for her family trying to navigate the system, this was incredibly stressful. What happens to the patients who haven’t got a family around to support and advocate for them?

We need to look at the whole care pathway and try to design it from the patient and family’s perspective.

*The names in this blog have been changed to ensure anonymity. 

Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected].

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