CAMPAIGNS & PROJECTS
TIME TO DeLIVER: GETTING A GRIP ON HE
This is the first report from Europe to highlight the significant burden of hepatic encephalopathy (HE) on patients, their carers, families and society. The 'Time to DeLiver: Getting a Grip on HE’ report, was authored by clinical and patient association experts from across Europe*. The report highlights ten calls to action which are critical to improve the identification, treatment and management of hepatic encephalopathy.
I'M NOT TOO SEXY TO GET TESTED
Our newest campaign, in partnership with Hep C Positive. On World Hepatitis Day (28th July) we launched a national campaign to raise awareness of hepatitis C. Working with 90s Pop Duo, Right Said Fred, Hep C Positive produced a fly-on-the-wall documentary about their journey to get tested for hep C.
LIVING WITH HEP C SURVEY
A new survey exploring the experiences of people living with hepatitis C is being conducted between September and October 2016. The survey looks to better understand the current barriers and challenges faced by people living with hepatitis C in the UK, and ascertain their views on the care and support they have received.
The anonymous survey is open to anyone living with hepatitis C across the UK and can be accessed here. No personal data will be collected as part of the survey.
Please note that the survey is being conducted by MHP Communications in collaboration with Liver4Life, and the pharmaceutical company MSD. Complete the survey.
PHARMACY LOOK BACK PROJECT
Working with the specialist nursing team in Bournemouth and local pharmacies, we have been conducting drop-in clinics to re-engage with people who know they have hepatitis C but are not currently seeking care or advice. The nurses explain the symptoms of the virus as well as discussing new treatment options.
We're very proud to have been approved to train and certificate UK medical staff to use FibroScan on patients. A FibroScan is a type of ultrasound that can measure the degree of inflammation in your liver. It is a simple, painless test that uses high frequency sound waves.
If you'd like a list of hospitals that have Fibroscans, contact us via email or by calling us on08000 74 34 94
OPTIMISING HEP C SUPPORT
Phil Spalding, our Hep C lead, is working very hard to develop and deliver a series of educational events that aim to work with local communities across the UK on Hepatitis C, what it is, how you can contract it and what if feels like to have it. Phil runs 2-day workshops that local interested parties are invited to, encouraging a greater awareness of this condition in their community to encourage better understanding, increase identification of viral hepatitis and equip them with the skills they might need to offer support to people who are affected. Contact Phil for more info.
We have been working hard with the National Institute for Health and Care Excellence (NICE) on many of the appraisals they have in development. Many of these are ongoing and we always aim to ensure that patient's views and experiences are shared during the rigorous consultation and scoping phases. If you would like to feed in to the process or learn more, please contact Richard
PATIENT SURVEY ON HEPATIC ENCEPHALOPATHY
Between April and December 2014 we ran our first patient survey for people who have been affected by Hepatic Encephalopathy (HE). HE is a condition that affects the brain when the liver isn’t working very well. We will continue to campaign for those affected by HE and would love to hear from you if you have personal experience of the condition, whether you are a patient or a carer. Please contact Richard via email.
SOUTH ASIAN HEP C CAMPAIGN
Tuesday 27th October saw us call for urgent action to improve the management of hepatitis C within the UK’s South Asian community
To support our call to action, a group of MPs, pledged to improve the diagnosis and management of hepatitis C infection among these patients. Read the report here.