The challenges of navigating the healthcare system: Margaret'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, systems not joined up, lack of communication, 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, *Margaret shares her and family's experiences of trying to coordinate their elderly father's upcoming surgery.

Content

Interoperability issues

My father has dementia and has a complex set of health issues, as a lot of elderly people do. He has a number of comorbidities, including vascular, heart, and cognition and memory problems, that has meant coordinating his care between the care home, his GP, the local hospital and a specialist hospital has been quite complex. There have been multiple issues but there were two that stood out.

The first issue was at the diagnostic stage. My father has severe vascular problems and he needed fairly urgent and necessary surgery. In order to assess whether he was suitable for surgery, given his heart condition, he needed a scan. We have had problems in the past in getting access to scans on his heart so the GP said in order to move things on quicker it would be good to get the scan done privately. As the surgery was urgent, we paid to get the scan done at a private diagnostic centre. However, when it came to getting the information from the private diagnostic centre to the tertiary hospital where he was being treated we encountered problems.

The hospital couldn’t access the scans from the private hospital because they were two different systems which meant there was an interoperability issue as the two systems ‘didn’t talk to each other’.

One of the suggestions I was given was that I could drive to the private diagnostic centre, which was about a 40 mile drive from my house, with a CD, and then they would download the scans onto the CD and I could then drive back to the hospital, which was about another 35 mile drive.

There were multiple calls and this was really quite distressing for our family because we knew my father needed access to the scans urgently. In the end they said they’d do another scan in the hospital. Although I don't think there were any kind of safety issues with my father having another scan, it did mean that not only did it cause delays and stress for my father and the family, it was also a cost to the NHS, which could have been avoided.

Communication problems between departments

Then around the same time, the hospital wanted to do another scan on my father to prepare for the surgery. Again, as it was urgent, I kept ringing the hospital asking if he had his scan yet but because my father was under the vascular and cardiac departments it was often difficult to know who to speak to because one department needed information from the other and they hadn't received it. So I’d get through to one department who then told me to phone another department, or I would be put on hold by someone from admin who didn’t know the answer and would say they’d ring back but didn’t because they were very busy.

As a carer/relative you don’t know what’s happening and you become worried that your loved one is lost in the system.

I persisted in phoning but, coincidentally, at the same time my sister visited my father’s house to pick up some bits for him. She saw there was a letter from the hospital so she opened it and it was a letter inviting my father in to have an outpatient appointment scan in the hospital he was an inpatient in!

I ended up going to PALS. The lady I spoke to was understanding, sympathetic, kind and highly efficient. But she told me this happened all the time as the radiology department doesn't have access to the hospital's IT system, so they wouldn't know my father was an inpatient and would have just invited him in in a timely way but they would have done that as if he was an outpatient.

I coordinated between the different departments and we finally got the scan for my father, he had the surgery and survived. However, these delays could have compromised his health because the surgery was urgent and if he had deteriorated whilst waiting that may have killed him.

As a family we were very conscious that time was of the essence and we had to push continuously.

Lack of information given to families

These are just two examples from a multiple of occasions where we as a family were trying to get information. My father was elderly and wouldn’t have questioned the doctor. And because of his cognition issues due to his dementia, and also because he was on high doses of pain medication, he becomes confused and we couldn’t always rely on what he told us. However, often the healthcare professionals wouldn’t tell us things, despite me being next of kin and with documented power of attorney, and told us to speak to my father.

So as a carer or relative you are trying to join the dots and work within a health system that isn’t coordinated.

What I want to see change

On the face of it they may seem like quite small examples, but when they build up, they are significant in terms of risk. My father was a high-risk patient and if it wasn’t for our diligence and persistence he would have fallen through the cracks, to a significant detriment to his health. I didn’t want there to be avoidable harm, an investigation and ‘lessons learned.’

I want us to be working in a coordinated and proactive manner to recognise the risks and void any harm. And for that insight to be used to ensure systems and processes are improved for the benefit of other patients and families.

Also, I want opportunities to share my experience, not as a formal complaint but for genuine interest in our family’s customer experience. Again, for learning and future preventative action not for blame.

*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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