A new research partnership is seeking the voices of the public and research community as part of efforts to improve access to liver services and develop vital research.
Scotland has some of the worst rates for liver disease in the world, with alcohol-related deaths currently at their highest level in 14 years.
The Scottish Hepatology Access Research Partnership (SHARP) aims to help tackle the issue. This country-wide initiative brings together specialists in liver disease, public health specialists, nurses, general practitioners, social care services, alcohol and drug partnerships, charities, and patients.
To gain a greater understanding of where patients are encountering challenges in accessing liver services, a short online questionnaire has been developed. Not only will it help identify barriers to current services, but it will also help shape future research initiatives and drive-up improvements in care and treatment.
Professor Ewan Forrest, Consultant Hepatologist and NHS Greater Glasgow and Clyde, NHS Research Scotland Hepatology Clinical Lead, and Co-lead for SHARP explains:
“Liver disease usually develops silently with no signs or symptoms, and the routine tests currently done in general practice do not detect unsuspected liver scarring or cirrhosis.
“This presents a huge healthcare challenge. Combining the insights and expertise of teams across the country is one part of the work of SHARP, but to truly understand the barriers to accessing liver services and ensure we can provide the best care for the future, the views of patients and the public are vital.
“I urge all of those affected by liver disease, including family, friends and carers to complete the questionnaire and ensure your voice is heard.”
SHARP are targeting four main areas of work:
- Understanding current access to liver services across Scotland including finding out what gaps exist and the barriers to accessing services, particularly in geographically isolated and deprived communities across Scotland where risk is greatest
- Exploring new technologies to which could help improve monitoring and management of liver disease, and also reduce the requirements for people living with it to attend their GP or local hospital for blood tests
- Early identification of those at risk of future liver problems to enable proactive and targeted strategies for prevention and monitoring and ultimately better health outcomes
- Understanding the reasons why some people with liver disease are not able to access, or don’t engage with, liver services
Dr Ruairi Lynch, Consultant Hepatologist and Gastroenterologist at NHS Tayside and Co-lead for SHARP said:
“Unfortunately, about three-quarters of people with cirrhosis, or scarring of the liver, are not diagnosed until they present to hospital with complications of end-stage liver disease. By this time, life expectancy is significantly reduced and treatment options are limited.
“It is therefore vital that SHARP plays a leading role in gaining a detailed picture on issues relating to the accessibility of liver services for those at risk of developing liver disease as well as those who already have liver disease.
“We can then address these issues and put in place the right research, interventions and support to make improvements in care. This requires input from all affected and that is why it is hugely important to our work that we get views and input from patients, their families and carers, in addition to the research community.”
British Liver Trust are a key partner in SHARP. Director of Communications and Policy Vanessa Hebditch, said: “We’re delighted to be one of the key partners of this initiative. By placing the patient voice at the centre of the partnership, we aim to gain much better insight into the barriers that patients face when accessing liver services. We hope that the resulting research will drive up care across Scotland and the rest of the UK.”
Patient Kirsty Mills added: “SHARP has been great in giving me an opportunity to offer my views and experiences which has made me feel very included and valued. It’s reassuring to know that this will help to decide the benefit of research projects and shape them, potentially leading to liver service improvements that could benefit both current and future patients across Scotland.”
