Supporting family; life with rheumatoid arthritis
Rheumatoid arthritis impacts upon the entire family, yet there is little support and information available to this often overlooked group. Adjusting family life to include RA can be very tough. We will offer support and information to family members to lessen the negative impacts of the disease.
January 2013 - December 2013
National Rheumatoid Arthritis Society (NRAS)
When someone is diagnosed with rheumatoid arthritis (RA) it can feel like their world has been ripped out from underneath them; what we often fail to recognise is that those close to them, feel the very same. Support is available for those living with the disease, but there aren’t many options on where to turn for their family members, who also face an impact on their lives, from the disease, and may need support and information to help them adjust.
Our 2012 survey, ‘Family Matters’, found that family members want more support and relevant information to be available to them, particularly during the early stages of a family member's diagnosis. We will develop our website, our social media portfolio and our freephone helpline to support and inform family members through the diagnosis period of a loved one and then, if necessary, onto the wider impacts RA can have on finances, domestic life, social life, relationships and wellbeing.
To engage with more family members, one-to-one, who have a relative living with RA
Activities» Hold an in-house training session for all frontline staff, who regularly have contact with our beneficiaries in the support and information sense
» Use social media, our printed media, our members and our group coordinators to market the new resources once available.
Success will be measured by 15% of the monthly helpline calls to come from family members, rising to 20% once we begin to promote the new addition.
To provide more detailed online information for family members and offer peer to peer communication
Activities» To produce a new section on the NRAS website for family members
» Be more active on Twitter and Facebook about our new information sources for the family and engage with beneficiaries
» To promote use of NRAS social blogging site, HealthUnlocked, for family members
Success will be launching a new dedicated section on our website for family members and receiving 300 unique visitors a month to it. To witness an increase in HealthUnlocked users.
The project will help family members to understand and cope with a loved one going through a diagnosis of RA and provide support and information to those that need it, when they need it. We will demonstrate the success of this project by evaluating the services accessed by family members. We have a comprehensive outcome measurement strategy and by using questionnaires and semi-structured interviews we will code emerging themes. Success will be 85% of users stating clear benefit from the service.
There is a risk that target beneficiaries may choose to not access the resources we will create, however we are confident that the findings of the ‘Family Matters’ survey has found a need and as such we have designed appealing and accessible resources that family members should find beneficial.
Another risk is that potential beneficiaries may not be aware of the new service. We will tackle this with a social media drive, awareness raising through our communication streams and the NRAS Groups.
Funders of the project will receive regular email updates on our progress and they will be notified when we achieve project milestones. We will use social media to engage with our supporters and to promote the new services that NRAS has to offer
Budget - Project Cost: £6,000Loading graph....
Amount Heading Description £800 Internal Training Session An internal training session for staff on supporting and informing family members £300 Printed Media Specific leaflets for family members making them aware of the new services and how we can help £700 Website Development Creating the new 'Family Members' section on our website £4,200 Staff Time Cost of staff members operating the helpline, engaging on our social blogging site and social media
The project will run out of our offices in Maidenhead, Berkshire, however the helpline and website is designed to be as accessible as possible across the UK, as RA is not limited to geographical location and can affect anyone.
It is estimated that 1% of the population in the UK live with rheumatoid arthritis. Potential beneficiaries include any family members and friends of anyone living with RA. Our services will be there as and when they are required. We hope to engage with at least 35-45 friends and family members every month on our helpline and around 75-80 freinds and family members on HealthUnlocked and NRAS social media.
NRAS is the only patient led charity working specifically for the benefit of people with rheumatoid arthritis within the UK. We focus on supporting, educating, informing and advocating for the 690,000 people living every day with this disease. We have already established the support services in this project, however without great context to help family members and friends. Our helpline receives 4,000 contacts annually and HealthUnlocked has 1,500 registered members and 8,000 users.
Read more about the Charity running this project.
Clare is the NRAS Director of External Affairs and was heavily involved in the Family Matters Survey. Clare will lead the internal training sessions.
Lorrliaine is the NRAS Helpne Manager and has been with the charity since our launch in 2001. Lorraine will oversee the new information we will offer.
Ruth is our Online and Social Media Coordinator, responsible for all online communication and content. Ruth will oversee the website developments.