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This e-bulletin provides an update on some of the work Hepatitis Scotland is currently involved in along with along with our partner organisations. We also seek input into our some of our upcoming work.
A unique study is being launched in Scotland to test whether Vitamin D can enhance treatment of Hepatitis C. The study is a partnership between researchers from Dundee University, key Scottish Hepatitis services and Hepatitis Scotland and could have significant implications on the cost and effectiveness of Hepatitis C treatments. Press Release.
A Hepatitis C Conference for Patients by Patients
9.30am - 4pm
Wednesday 19th March
The Tollbooth, Stirling
Hepatitis Scotland and The Hepatitis C Trust are organising a conference for people across Scotland who have been diagnosed with Hepatitis C, whether they currently have the virus or have previously cleared it.
In May 2013 National Hepatitis Patient Forum representatives expressed their desire to have an event aimed at patients, rather than professionals, so as to get more focussed information about their condition, help create new networks and meet peers from across Scotland.
The agenda includes a keynote address by the Minister for Public Health, an overview of new treatments emerging into the market and a presentation on patient activism by Charles Gore, President of the World Hepatitis Alliance and CEO of the Hepatitis C Trust. Two rounds of workshops will also occur on the day, including living with Hepatitis C, clarifying hospital appointments, drug trials, how hepatitis C can affect families, peer support and the role of managed care networks.
You can follow discussion on the conference on Twitter using #OurHepC
You can view the conference flyer and access booking forms here.
At the Hepatitis C Patient Conference there will be an opportunity to hear patient’s experience of accessing treatment within Scotland. There is also an interactive electronic voting and expert panel session to help gauge opinions to current issues and any queries highlighted by the audience.
If you would like to submit questions to be put to the panel and answered at the conference, please contact Lesley Bon, Patient Involvement Officer at Hepatitis Scotland at firstname.lastname@example.org. or send them to your named local contact which you can find on your booking form.
For World Hepatitis Day 2013, Hepatitis Scotland worked with Addaction’s C Plus Project in Edinburgh to undertake a Community Action Research Project on people’s experiences of being diagnosed with Hepatitis C in Scotland. Read report here.
A qualitative study looking at social care support experience and needs from people diagnosed with Hepatitis C in Greater Glasgow & Clyde, Grampian and Lanarkshire. Read report here.
A support group for people in North Ayrshire who have been diagnosed with Hepatitis C has just celebrated their 1 year anniversary as a group. Hepatitis Scotland went to their 1 year celebration to find out what they have accomplished in the last year, and what the members were looking forward in the next year.
The group meets once a month in Ardrossan, with lunch and a minibus provided to pick people up and drop people home again.
Members felt the group had provided them with many benefits including:
• Knowledge and information – on lots of different areas
• Don’t feel isolated and alone
• Support and camaraderie
• The confidentiality rules – you know your speaking in a safe place
• I just really look forward to coming
• I wish It was more often, but understand funding restrictions
• It gives us opportunities to get involved in more things
The members were asked to think back before the group began and how they felt then – they recalled only having a worker to talk to, and although having staff involved in the support group was highlighted as the number 1 thing that meant the group ran well, without having a space to talk with fellow patients left people feeling isolated – it was highlighted that knowing you’re not the only person in this situation was reassuring.
The additional information that was given in the group setting was also highlighted as being of great value; information on healthy eating and lifestyles, money advice and information on treatments and Hepatitis C all added to the members understanding and helped them to live healthier lives and access services to help. At the group on Friday 24th January was a member of Fresh Air-Shire, discussing smoking cessation with the group.
When asked what their top tip was for having a successful support group, the unanimous response from the members was having workers and nurses on board – to advertise to new patients, to organise the information on topics requested by the members and to provide the venue, send reminders, organise the minibus and provide lunch. The staff involved with the organisation of the group returned this favour, and stated that it was the members’ enthusiasm for the support group and information that resulted in having such a successful 1st year.
When asked what they looked forward to in the next year, some members were excited about new opportunities as peer educators and mentors. Others simply looked forward to continuing with the group and learning more from the information provided on leading a healthy life.
The staff involved in organising the support group are:
For more information on the North Ayrshire Support Group contact Chris Myles on 01563 826219 or email Chris.Myles@aaaht.scot.nhs.uk
Hepatitis Scotland, in partnership with Scottish Drug Forum’s National Quality Development Team and Grampian NHS, have developed an innovative and comprehensive training package which is being offered to a range of services across Grampian.
Frontline workers from statutory and voluntary sector services have signed up to attend 2 individual training events running through February and March on
• Viral Hepatitis – Enhancing the Role of Services for Vulnerable Young People
• Improving the Sexual and Reproductive Health of Drug Users
The events are delivered by Graham Mackintosh, Hepatitis Scotland National Training Officer, Scottish Drug Forum’s Adrienne Hannah, National Training and Development Officer for Sexual and Reproductive Health, and Jackie Williams, BBV/Sexual Health Trainer, NHS Grampian.
At times there is a lot of confusion around how infections like Hepatitis C, Hepatitis B and HIV are spread. Some people think that all are sexually transmitted in equal measure and this causes them to take unnecessary extra risks with their health.
This blog post provides a very straightforward look at how HIV, Hepatitis B and Hepatitis C are normally transmitted and what risk, if any, there is through sexual transmission.
Read blog post here.
In the last few months, Hepatitis Scotland's Lead Officer, Leon Wylie, has given presentations regarding aspects of Scotland's response to Hepatitis C at European-wide events in Germany, Romania and Belgium, with another marked in for Ireland next month.
He said, "Myself and other Scottish representatives have been getting fantastic feedback where-ever we have shown the outcomes of the national work. There has been great interest shown by other European countries in taking on board the approaches we have succesfully used and It is a credit to all the people and organisations who pulled together to bring the Hepatitis C action plans to fruition
World Hepatitis Day takes place on July 28th. This year in Scotland will see the return of the HepCScot advertising campaign with advertisements on busses, in supermarkets and hospitals across Scotland as well as the launch of a new Facebook page tying in with the campaign website www.hepcscot.org. The 'Big Red Cs' will be out on the campaign trail again in cities and towns throughout Scotland.
In particular the campaign targets the 18,000 people in Scotland who have Hepatitis C but don't know it yet with a call to action to get tested. This year's campaign will also be pushing for people who know their Hepatitis C status to access treatment, especially in light of new, more effective and shorter duration treatments which are likely to be available in late 2014.
Due to the Commonwealth Games taking place in Glasgow, there will be no national event, however there are likely to be a number of smaller events taking place around the country. You can keep up to date with these by checking the Hepatitis Scotland events calendar.
The campaign is a joint effort by Hepatitis Scotland, Waverley Care, The Hepatitis C Trust, Positive Help and Addaction to raise awareness of Hepatitis C around World Hepatitis Day.