Interview conducted by April Cashin-Garbutt, BA Hons (Cantab)
How do UK hepatitis C services compare to those in other countries?
Within the UK there are several centres whose nurse specialists work to a best practice model, delivering care and achieving outcomes which are extremely high in areas of patient retention, adherence to medication and completion of the treatment regimen. With this they achieve cure rates which are some of the highest in the World.
Unfortunately there are areas treating HCV in the UK which are not given the staff resources or support required to achieve this which can reduce the number of patients entering into and completing treatment.
Charles Gore, Chief Executive of The Hepatitis C Trust, has recently said, “The alarming rise in hepatitis C related deaths must be addressed”. Why do you think treatment rates for hepatitis C are declining?
In some situations treatment rates have declined as patients wait to access the ‘all oral’ treatment regimens which are currently in clinical trials. This should however be done in the knowledge of underlying liver condition and with the best information available in discussion with the patient's Hepatologist.
We are currently seeing an increasing rise in HCV diagnosis and the National Institute for Health and Care Excellence delivered guidance to increase testing and awareness for HCV and Hepatitis B which I would like to think that some of the increase is as a result of this although as yet. There does not appear to be a reflection in the referral rates to the treatment centres for these patients as yet and there is significant variability in where there is access to treatment services for many patients. If the estimated 300,000 – 700,000 people suspected to be infected with HCV in England (most of who are unaware) is accurate then there are insufficient treatment units in the UK to deal with the health burden.
GPs are responsible for over 25% of all HCV tests performed each year but many of these patients never get referred or attend treatment centres for a condition which can lead to permanent liver damage and death but is increasingly curable.
What impact do you think the NHS reforms will have on hepatitis treatment services in the UK?
We are currently experiencing one of the largest alterations to the Health Service funding system and whilst the new Clinical Commissioning Groups (CCGs) organise themselves then I feel we will see a drop in those patients detected as HCV positive being referred into the services.
This may be as a result the CCGs commissioning other areas of care. There are very few other disease areas which have the same cost implications to CCGs as severe liver related conditions of which HCV is one three main causes (obesity and alcohol being the other two) which as a result contribute significantly to increasing type II diabetes and heart disease yet have as great potential for improved patient care, increased survival and improved mortality and reduced cost as the treating and curing HCV.
HCV treatment is traditionally seen as long and difficult treatment (with chemotherapeutic-like side effects) as many patients require 48 weeks of treatment with specialised medications which require large amounts of support for the patients. This is nearly all delivered via specialist nurse services but for the majority of patients this can result in a CURE a return to a rewarding family life, job, career and can often prevent them from developing any long term liver condition.
If hepatitis treatments are reduced as a result of the NHS reforms many of those not cured will continue to have to live with a liver disease which can infect others, the condition of their liver may continue to deteriorate and they could develop significant complications.
I would like to see patients with HCV and other liver related conditions given due consideration and attention in the new NHS reformed structure as they account for the 5th highest cause of mortality in the UK.
Please can you give an overview of the recent HALO report project?
I believe that the report has been relatively successful as several of the initiatives used demonstrate best practice, high patient experience and cost effective care.
I remain unclear as to where it has been circulated and as a result the sphere of influence it can have in the wider world of healthcare. The frameworks used can be beneficial for other disease areas and in areas with similar patient groups or where co-infection with HCV is common.
What were the findings of this report?
I have found the findings favourable and encouraging that whilst we are undergoing health reforms there are many areas where new initiatives are encouraged not only from medical colleagues but from nurse specialists within experienced multidisciplinary groups.
The key for me from the HALO Report was increased evidence that that a well operating, multidisciplinary team can affect patient care and experience in a really positive way and some of these initiatives provide a cost effective pathway for the NHS and local CCGs.
How do you think current diagnosis and treatment rates of hepatitis C in the UK can be improved?
I would suggest that we probably need a national coordinated approach to diagnose and assess those with HCV, this for many is a disease which carries significant stigma often born out of a lack of knowledge, unfortunately this stigma and that associated with alcohol and obesity results in the avoidance of discussing liver disease as a consequence leads to a population dying young which is not seen in any of the other major disease areas.
The average age of death with liver disease is 59 years in the UK yet much of this is preventable with early detection and effective treatments.
We can learn lessons from many other countries; the USA currently has a nationwide campaign targeting adults born between 1945 and 1965! Being born does not carry stigma and if an adult presents to a healthcare provider in this age range they are offered testing automatically.
One of the motivations for this is that a significant number of patients detected with advanced liver disease now experimented with some form of drug use even once, obtained a tattoo or blood transfusions before 1989 many of whom who do not feel they are at risk.
HCV is easier to cure before the liver is too badly affected and locating those who have had the disease longer could allow healthcare professionals an opportunity to do this preventing progression of disease and complications such as cirrhosis, cancer, and the need for transplant which improves survival rates.
There are many initiatives which can encouraged, the use of advocates within the higher prevalence populations to raise awareness for testing as highlighted by Dean Lindzey’s project prove beneficial and can reduce suspicion within communities.
In HBV the Jade Ribbon campaign is driven from within the Asia pacific populations and has groups within local communities and universities raising awareness and treatment.
The testing of pregnant women can assist to keep the risk of transmission to the baby at and after birth to a minimum. Immigration screening assists in identifying health requirements so these can be met and delivered to those who need these.
Positive and appropriate health information within the media can assist greatly in helping to reduce the stigma. Soap operas have recently been criticized for always showing drinking in all episodes it would be very welcome for them to carry positive health story lines on these areas. Having a main cast character dealing with a HCV diagnosis through the real pathway to cure could have a great positive health potential.
Why do you think people don't like to talk about it?
I believe that stigma prevents most people from discussing most areas of liver disease; some may feel guilty for a behaviour which they deem responsible.
As a society we like to enjoy ourselves which can include over indulgence in alcohol, food or recreational/illicit drug use (even once as a tester) in some this can become a significant problem and stigma can prevent them accessing health advice support and treatments. Unfortunately this results in significant disease before many symptoms are experienced and a low age of mortality.
What can be learnt from examples of best practice outlined in the HALO report?
The examples of best practice in the HALO report I hope can assist other healthcare areas to implement projects/support business cases to expand departments improving patient care and outcomes using real-life evidence which has proven cost effective in the management and support of people infected with HCV. I have certainly gained some ideas from this report.
I hope that this in turn enables commissioners, healthcare providers and the specialist teams to fund, diagnose and treat more people with HCV, gaining high cure rates which can improve the quality of life substantially for those patients with HCV.
For those in whom current treatments do not afford a cure that there is possibly something newer in development that may offer this.
The use of these examples may also empower patients to ask for access to resources and care.
How do you think the future of hepatitis C services in the UK will develop?
It is difficult to predict the future for HCV services as these are currently highly skilled areas of care given the chemotherapeutic nature of the medications used.
Differences in requirements are being seen within individual genotypes of the virus.
HCV however is and should be a patient specific plan designed for the individual and the team with the most appropriate medications and support available preferably at the time the patient feels is most appropriate.
In the future it is hoped that for all genotypes that the treatment will be one tablet or a combination of tablets only with minimal side effects. These may prove highly expensive which may result in limited access to these for patient populations.
My concern is should treatment become all oral, some people may mix medications, which is extremely risky, untested and may result in problems with HCV becoming multiple resistant to oral medications.
If the new medication development becomes a reality then I would like to think as a country with some of the best expert hepatitis teams and healthcare facilities and in the world that we would be willing to increase the hepatitis resources significantly and be encouraged to locate, treat and cure those with this virus as this would be within our ability to do so and assist significantly in increasing liver related mortality from 59 years of age.
HCV treatment is an exciting field of rapid development and we are successfully curing more of those infected, preventing future infections and reducing the cost burden to the NHS. There’s still however the inaccuracy out there that HCV is not curable. Hepatitis C is extremely curable for the majority of patients and this is increasing.
Therefore, I really would encourage all healthcare providers to identify those in your areas who are at risk and offer testing. For people to be asking could I be at risk? They should ask themselves the following questions: was I born between 1945 and 1965; have I had a blood transfusion prior to 1989; have I received vaccinations or body piercings outside of the UK, ever experimented with drugs (even once), had a tattoo? If you can ask yourself those questions and answer yes to any of them then there is a legitimate risk and a legitimate reason to ask your GP to be tested.
Where can readers find more information?
The report is available to view online at: http://www.hepctrust.org.uk/News_Resources/resources/reports
Readers can also find information at:-
About Louise Campbell
RN, RMN, Cert MHSC, MSc (Distinction) Advancing Practice
Senior Nurse Liver Unit, Imperial College Healthcare NHS Trust
Louise Campbell undertook RN training at Kings College Hospital and then worked in the Liver Unit for 12 years is duel training in mental health and has attained a master’s degree in advancing practice. Louise joined the Hepatology team at Imperial College Healthcare in 2006 and currently manages the Liver and Anti-viral Unit including the Hesketh Hepatology Clinical Research facility at St Mary’s hospital campus.
Prior to this she worked for 3 years in liver and renal transplantation and hepatitis C in the Royal Prince Alfred Hospital, Sydney Australia having been a hepatitis nurse specialist at the Chelsea & Westminster hospital, London since 2001.
Louise is a strong advocate for and speaks both nationally and internationally on nurse led services and high quality patient care for patients with hepatitis and liver disease. Louise was the chair of the first European Association for the study of liver (EASL); Nurses and associates forum in 2012, which is now a permanent addition to this renowned meeting.