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I feel that is important that you are able have an open and honest relationship with you healthcare team. At the liver treatment clinic I attend, this is a nurse led team. While this is a busy department, patients are at the centre of care. This week’s insight will be focusing on two Q&A interviews with a nurse from a NHS liver treatment clinic in the UK and Philippa Collins, a study coordinator/Clinical research nurse, from the Hvidovre hospital in Denmark.
A nurse’s perspective, UK
Q: What advice would you give to a patient who is starting treatment?
A: Many patients are apprehensive and anxious when commencing treatment. As a nurse I explain to my patients the purpose for the antiviral treatment and the main goal would be to achieve viral load suppression and replication which reduces the risk of HCV liver cirrhosis.
When patients are embarking on treatment, I would also explain about how effective the new treatments are. They have manageable side-effects, with good treatment outcomes. I feel it is important that their treatment is not going to impede on their daily activities and that they are motivated from the start.
Elements that need to be considered while on treatment could include removing any external factors that may impede on treatment outcomes, like lifestyle habitats, reducing and eventually stopping all alcohol intake.
Taking treatment on time is very important and to be honest with yourself and the healthcare team if you miss any doses. Always seek medical help at the liver clinic if you are experiencing bad intolerable side-effects and allergic reactions.
I feel it is important to get someone who will be able to support you through treatment, someone coming with you to your first appointment, who is able to give you emotional support.
To have a good working relationship with your employer is important. Inform them of your treatment, what you are going through and how this may affect your performance. No need to be too specific of what disease you are being treated for, speak with your healthcare team if you need support on how best to achieve this.
It is vital that we are able to provide paitients with written information on the treatment they will be taking and also we should encourage paitients to seek knowledge and understanding about their treatment and condition from specific websites like The British Liver Trust.
Q: How important do you feel peer to peer support is when patients are going through treatment?
A: There is stigma attached to hepatitis C infection, some patients want to keep it all private and do not want their relatives or friends knowing about their condition. Peer to peer support is a type of role model. This provides a good platform form some individuals to discuss their worries without being judged.
The use of peer support in general is seen as sharing experiences, this creates a sense of understanding, and belonging and that you are not alone. It is easier to discuss certain aspects of the treatment with others who are going through or have gone through treatment as there are fewer barriers and both parties benefit from this interaction. Peer to peer support encourages self-care in a positive way and enhances a good treatment outcomes.
We need to lessen the feeling of isolation, this helps to motivate and this acts as a coping mechanism for paitients, particularly when treatment appears to be difficult and individuals are feeling down. Individual experiences may differ, therefore it is important the information, resources and access to support services is useful, accurate and consistent.
Q: Hepatitis C treatments have advanced, but what challenges do patients still face in achieving their treatment goals?
A: Not everyone at the present time can have access to the new treatment because of financial constrain the NHS is under, therefore patients with low liver disease or fibrosis score are having to wait for new guidelines which will allow them treatment.
Hepatitis C is a silent disease and there is not enough to emphasis or a dedicated campaign to educate the public health complications if untreated. We need to reach out to those who are most risk, allow them to come forward to seek testing and treatment.
Older treatments had a multitude of side-effects, which sometimes made it difficult for patients to tolerate and treatment had to be discontinued. We are now seeing a higher percentage of patient’s complete treatment and with this comes better clinical outcomes.
Q: How has your role as a nurse changed with new emerging treatments?
A: New treatment for hepatitis C have a shorter course duration ranging from 8 to 12 weeks and low side effect profiles, therefore we have a quicker turnaround of patients and we should be able to treat more people.
Treatment guidelines are set by the NHS England, therefore as nurses we need to attend multi-disciplinary meetings on a regular basis to discuss treatment, decision is taken collectively according to a patient genotype and fibrosis score.
News treatments in many aspects has generated lots of paperwork for us to be completed for each individual patient. A treatment application is completed using a vigorous electronic form filling method.
We need to be careful when treating patients with comorbidities because of drug to drug interactions. We as nurses need to ensure that a treatment outcome is not compromised, patient safety is key when medication is co administered.
We are treating patients with advance live disease, therefore because of disease complication we have to monitor those patients more closely, which is sometimes time consuming.
Finally we are involved in data collection and research for the NHS England. I am very passionate about this and it is key for future treatment developments.
View the Q&A with Philippa Collins, Study Coordinator/Clinical Research Nurse, department of Infectious Diseases, Hvidovre Hospital, Denmark.