Clare Jacklin, Director of External Affairs, National Rheumatoid Arthritis Society (NRAS)
I am a member of the NRAS senior management team having joined NRAS in 2007 as Volunteer Network Manager. I’ve been a member of PiF since 2011 and have been active in sharing the NRAS experience of information giving to other PiF members and find the information distributed via the Forum of great value.
NRAS is the only UK patient organisation focussing specifically on rheumatoid arthritis (RA). NRAS currently employ 24 staff in the NRAS offices in Maidenhead in Berkshire. Via the NRAS website, membership scheme, local groups, rheumatology units and social media the society is reaching and supporting over half a million people every year right across the UK and increasingly across the globe living with RA. The society also supports and works with a wide range of clinicians, academics and health care professionals as well as industry partners ensuring that the patient voice is heard and listened to in all aspects of care and development of future care of those with inflammatory arthritis.
RA is an auto-immune condition which can strike at any age and can be very debilitating not only due to the joint destruction but due to the pain and fatigue which are also key symptoms of the disease impacting on all aspects of a patient’s life. There are 690,000 people living with RA in the UK and a further 12,000 children living with Juvenile Idiopathic Arthritis.
Being the “Voice of RA in the UK” NRAS leads the way on patient information on all aspects of living with this long term condition and all our information publications and website resources meet the Information Standards accreditation criteria.
A key part of my role is to contribute and project-manage the development of new information resources. One most recent project was the development (following intensive research) of a booklet on the impact of RA on Emotions, Relationships and Sexuality which I nicknamed the “50 Shades of RA” book! It is a difficult and sensitive topic which health care professionals and nurses often find difficult to broach with a patient in clinic. The booklet has been very well received by both patients and health professionals as a useful resource. One of my next projects following on from this will be working with the Royal College of Nursing and the author of the booklet, Sarah Collins, to develop a training event for nurses and allied health professionals on this specific topic.
Other projects I’ve managed in the last few months include developing video tutorials on “RA & Exercise” and another on “RA and Foot Health”, both of which are available online via the NRAS website.
All NRAS information is freely supply and aims at ensuring all those living with RA have the best possible resources available to them to help them lead full and productive lives through good disease self management. NRAS guides have been developed and cover a wide range of topics such as Understanding Biologic Therapies; Welfare Benefits and Personal Independence Payments; Work rights and responsibilities and much more.
My role has not only included developing such resources but also supporting clinical and social research, health professional education, peer to peer support and raising public awareness of RA.
Through my work on peer to peer support I’ve been privileged to meet hundreds of wonderful people living with RA and training them as NRAS Volunteers to help others via telephone support calls and running local NRAS groups. “People who don’t have it, don’t get it!” a quote from one NRAS Volunteer that really sums up how peer support is so important.
Having our UK wide network of Members to call upon to be that vital patient voice on service redesign, research projects, awareness raising opportunities, industry and health care professional training and education is a fantastic resource which we highly value.
I feel incredibly fortunate and honoured to work for such an inspirational and pioneering charity such as NRAS. An organisation that has been instrumental at driving up standards of care for those living with RA and with an ever changing NHS our work has never been as important as it is now.
For more information on the work of NRAS visit www.nras.org.uk