Deborah Morris has a diagnosis of chronic relapsing optic neuropathy, which means she often needs intravenous therapy. In this article she describes two very different experiences of care she has received in recent years
I am a 60-year-old woman with a primary diagnosis of chronic relapsing optic neuropathy (CRION). I was diagnosed 12 years ago and the amount of immunosuppressive medication that I have been prescribed to maintain relative stability – as my condition is steroid-dependent – has caused all sorts of complications, the latest being recurrent chest infections. My chronic ill health issues have dictated that I have a tremendous amount of contact with various hospitals and different specialties.
Patient research ambassador
Before I retired because of ill health, I was an NHS directorate manager at the Royal Liverpool Trust managing gerontology and dermatology. I loved my job and remain extremely loyal to the NHS and the services it provides.
I still use the skills and networks I developed in my career. I am a patient research ambassador working with the Northwest Coast Clinical Research Network. They have helped me to set up a patient-led research community, which has been in place for two years now. In spite of their many chronic health issues, its members share a strong desire to give back to the NHS, raise awareness of NHS research, and become more involved in research themselves.
I feel much more vulnerable now because of the complicated health issues that I have. I receive intravenous (IV) therapy on a regular basis and it was thought that having a portacath fitted would be helpful, so in November 2018 I had a portacath fitted into my chest at the local trust.
In December 2018, I was admitted to hospital with acute abdominal pain and suspected diverticulitis. In the surgical assessment unit, I was cannulated despite having a portacath in situ; I was told that the nurse did not know how to use a portacath. The initial cannulation took her several attempts and, because the cannula was not effectively secured, the needle fell out and required re-siting. Pending the results of a CT scan, given that my C-reactive protein (CRP) level was very high, I was treated for diverticulitis. I received antibiotics and methylprednisolone IV.
During the following 24-hour period, my cannula fell out and had to be replaced three times. I had been told that if my CRP level decreased sufficiently I could go home, but the next day the surgical team were still not happy with it. However, from late afternoon until the next morning, I did not receive any IV therapy because of venous access problems. After the cannula failed for the third time, I waited for an on-call anaesthetist, who I never saw, and finally the on-call doctor, who had never seen a portacath. The doctor attempted cannulation five times, including twice in my feet. Because he was unable to re-site the cannula, my treatment was abandoned.
I was cannulated a total of 13 times, with subsequent widespread bruising on my arms, despite having portacath sitting in my chest offering direct venous access.
Sharing my experience
My motivation for sharing this experience is not to be negative, but to ask in a constructive way why, when portacaths were designed in the 1970s, the wider NHS community is still not familiar with them.
The consultant surgeon, junior doctor and several nurses of varying levels of seniority did not know what a portacath was or how to obtain venous access using it. I appreciate that there are specialist areas where staff are more familiar with portacaths, such as cancer care and neurology, but patients cared for in specialist areas usually interact with general areas at some point, often through emergency care. So why are general NHS staff so helpless when encountering a patient with a portacath?
In complete contrast, I was booked into a different hospital (which provides specialist orthopaedic care) for planned surgery on my right foot. The anaesthetist there was also unfamiliar with portacaths. However, we discussed how we could use my venous access to avoid complications and how we could retrieve recent blood test results from my regular neurological hospital to avoid an unnecessary cannulation.
Given my complicated presentation, I was placed first on the list for surgery in case problems should arise. We decided that on the day of surgery, my husband would site my portacath venous access before we arrived at the hospital. My husband and I had already agreed that if I ever required emergency care again – which is very likely – he would site my portacath needle ready to access wherever we were in the NHS system.
Although the staff at that trust were not familiar with portacaths, I was assessed and listened to and the care that was arranged was adapted to my needs. It was gold-standard care.
Patients are people
When you attend as many appointments as I do, in so many different hospitals and with so many different clinicians, you recognise patient-centred care when you experience it. It doesn’t cost anything, it just requires working alongside the patient and negotiating the best possible outcomes for that person. The key is having the will to do so in the first place.
I remember being taught during my nurse training at The London Hospital in 1976 that patients are people, not bed numbers. More than 40 years later, it seems the same mistakes are still being made. I always used to say to my nursing team that everyone coming to an acute hospital, whether they are a patient or a carer, are somehow in a crisis and therefore need to be treated with care and sensitivity.
I am only too aware of the complex pressures in the NHS, but the patient should always come first. I feel sad that there are staff who seem to have lost sight of this.
I am left asking one very simple question: why are NHS staff not keeping up to date with current practices, such as the use of portacaths? After all, this is not rocket science.