It was an honour for the British Liver Trust to have Gill Al-Kadhimi on our Nurse-led Helpline. As a former a transplant coordinator and a pioneering HCC clinical nurse specialist, Gill brought decades of experience to her role in supporting our callers. And now, as she retires, Gill reflects on her career and shares her views on the need for increased prevention and detection of liver disease and liver cancer.
Fifty-four years is a long time to have worked as a nurse. There have been massive changes in technology and treatments during this time which have made a huge difference, but as a nurse, for me, it’s always been about the patient who needs to be treated with skill, understanding, compassion and empathy. 
My nursing career began in 1970. I trained at St Bartholomew’s in London. I held a variety of positions after qualifying including being one of the first infection control nurses in the country. My interest in livers started when I worked as a ward manager on a new-high dependency unit at King’s College Hospital. I went on to become a liver transplant coordinator at Kings and while the on call was brutal and there was a lot to organise, it was an extremely interesting and rewarding job.
In general, the public did not have a lot of understanding about transplants and the liver at that time. Indeed, some people thought we had a store of livers! A large part of the role was explaining the transplant assessment process to patients, the complexities of the organ donation system, the operation itself and recovery afterwards. Having the assessment did not guarantee acceptance on the transplant list, there was a chance they might not get on the list at all or be taken off it if their condition improved or deteriorated. As a transplant coordinator I took calls from donor coordinators with offers of a potential donor liver. I would then have to organise the retrieval of the liver and the admission of the potential recipient. I had to warn that the liver might not be suitable for them. Many transplant recipients, particularly those with alcohol related liver disease, felt guilty because their new liver had come from someone who had died. I would explain that it was not their fault the person had died and the most important thing they could do in accepting that liver was to respect the decision that the donor and their family had made and to look after their new liver. Many transplant patients wrote to their donor family to acknowledge the gift and say a little about themselves.
A transplant is not a panacea for all. There are complex, difficult decisions to be made both by the patient and the transplant team. Some people sail through the process and are home in ten days after transplant, others need repeated hospital admissions and operations. When it goes well it’s amazing, but it doesn’t always and it’s a life-long commitment.
Hepatocellular Clinical Nurse Specialist
As a coordinator I became particularly interested in primary liver cancer (hepatocellular carcinoma) because an increasing number of cancer patients were being referred to us for transplant. There was no specialist nurse to keep track of them and give them the support they needed so I kept pestering until the post of Hepatocellular carcinoma (HCC) Clinical Nurse Specialist was created. 
There were no more than one or two other such nurses in the country at that time. I made the post into what I wanted it to be and what I thought the patients needed, which included developing my own nurse-led clinic. Some patients with advanced disease were put on a tablet medication. It was often a struggle emotionally, physically and financially to get to the hospital, so I set up a Skype clinic for stable patients. We had ‘virtual’ appointments, and I was able to send medication out to them. Patient numbers increased quickly, and I was eventually joined by another nurse. We were always busy and had an ever-growing to-do list. The post was rewarding, frustrating and emotionally draining in equal measure.
I was in post ten years. During that time, I presented at conferences both in the UK and abroad, published articles, made a teaching video with a colleague and was a finalist in the Cancer Nurse of the Year Awards in 2016. There are now four Clinical HCC Nurse Specialists at King’s because sadly the patient numbers keep on rising.
In a hospital setting you do your best to talk to patients, but time is very pressured. By joining the British Liver Trust’s Nurse-led helpline I was able to spend more time talking and listening. A conversation may start with a caller who is tense and tearful, but by the end you can hear in their voice how much more relaxed they are because they now have a plan. They often say: “This is the first time I’ve been listened to!” The fact that we are non judgemental and the service is confidential certainly helps callers to be honest about themselves.
The helpline is a lifeline fuelled by the nurses’ s seamless teamwork. We are all specialists in different areas so can direct patients to the appropriate person while also absorbing each other’s knowledge.
The calls range from very simple to extremely complex – the most frequent are about fatty liver disease, alcohol and viral hepatitis. We hear from people who believe their GPs aren’t taking their symptoms seriously, or they’ve had no follow-up after diagnosis, or speak to a different GP every time they call the surgery so have to keep explaining the same thing, or they can’t get a GP’s appointment at all. We also get calls from patients who are on the transplant list then taken off it or not accepted on it, patients with liver cancer who have been told there’s no suitable treatments and don’t understand why or are concerned about the long wait for scans and appointments. You never know what you’re going to get and that’s why it’s so important the helpline is staffed by experienced nurses.
Calls doubled during Covid. People were anxious for many reasons such as a lack of clarity about who was ‘vulnerable’ , who should have vaccination, which vaccination, why weren’t there any transplants. who should they contact at the hospital. The helpline team provided emotional support and directed callers to our website which was and is brilliant at providing up-to-date information.
While there have been big changes over the years I was nursing we’re still not getting liver cancer diagnoses early enough to give patients the curative treatments they need so long-term survival rates aren’t improving. Treatments may not be given in a timely manner due to the pressures on all the services required. We need a robust system that encourages those people who are at risk of liver cancer to be scanned. There must be a robust recall system if there is an issue with those scans. There also needs to be consistency in what surveillance is being carried out, who does that and who monitors the results.
Liver health awareness
Of course money needs to be spent on research and on the NHS but there also needs to be an awareness in the general public about the need to look after their health, including livers. Prevention is key and that requires education. The Love Your Liver Roadshow is an amazing tool for getting the word out to the general public. Encouraging people to look at reliable sources of information such as the British Liver trust website rather than some of the scaremongering articles online or in the press would also be helpful
Stigma about liver disease persists. The British Liver Trust has highlighted this with its campaign. Stigma stops people from going to their doctor or being honest when they do see a doctor. It particularly applies to people who are dependent on alcohol, no one chooses to be like that, it is an illness. The general public and even the medical profession can be very judgemental .
To be a nurse is a privilege. To be a small part of a person’s life when they are in pain, in the depths of despair, facing a terminal illness or even when they are celebrating good news is an honour. I will miss it.
