This is a new project which hopes to improve how the Haemophilia Society and people affected by bleeding disorders, working with healthcare professionals, influence improvements in treatment and care.
We are fortunate to have many motivated volunteers working in these areas already either with their treatment centres or through their local group. The Society feels that we can improve the support we offer people already making a huge contribution in this way and to those people who would like to get more involved in this kind of work.
As the project develops we will provide ways for people to share their experiences from right across the UK. This will give us a much clearer idea of any threats and opportunities and let the us speak with a much stronger voice for everyone who uses haemophilia services.
Despite many campaigning successes over the years the fact that recombinant treatment was recommended as the treatment of choice by the UKHCDO more than 10 years before it was available to all those with bleeding disorders for which there is a recombinant treatment shows that we can do even better.
THE AIMS OF GET INVOLVED: GET THE BEST
- To establish a network of lay representatives for bleeding disorders and provide adequate training and support for those people, ensuring that they are well informed, confident and effective in their role
- To develop patient involvement in the work of the Haemophilia Society at all levels.
OBJECTIVES
- Recruit as many service users into the project as possible, from all parts of the bleeding disorders community, to steer the project and become ‘Patient Advocates’; keeping them engaged and motivated.
- Provide Patient Advocates with appropriate training.
- Provide Patient Advocates with opportunities for mutual support, mentoring and discussion.
- To produce clear, well researched information and messages for Patient Advocates that are accountable to the Society as a whole.
- To work with clinicians and form partnerships with other organisation to fulfil the aims of the project.
- That the commitment of those that volunteer within this project is respected by using time and resources efficiently and ensure reasonable expenses are reimbursed.
