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2017
It’s not like phoning a big call centre, but more like phoning a friend. A friend that will listen and help.
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CONTENTSFrom the Chief Executive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Why We Exist . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Raising Awareness of Invisible Diseases. . . . . . . . . . . . . . . . . . 6
Rheumatoid Arthritis Awareness Week . . . . . . . . . . . . . . . . . . 7
NRAS – There for the Entire Family. . . . . . . . . . . . . . . . . . . . . 8
Supported Self-Management. . . . . . . . . . . . . . . . . . . . . . . . . . 9
JIA Facts, Figures and Growth 2017 . . . . . . . . . . . . . . . . . . . 10
The Richardson Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
The Varied Work of NRAS. . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Changing Minds, Changing Services, Changing Lives . . . . . . 18
Working with the Pharmaceutical Industry . . . . . . . . . . . . . 19
Acknowledging the Support of Trust & Grant Supporters . . . 19
Where Our Money Comes From . . . . . . . . . . . . . . . . . . . . . . 20
Our Wonderful NRAS Fundraisers . . . . . . . . . . . . . . . . . . . . . 21
Message from Our Chair . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
The Team Behind NRAS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Patrons, Trustees and Advisors . . . . . . . . . . . . . . . . . . . . . . . . 24
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FROM THE CHIEF EXECUTIVENRAS has come a long way in just 17 years since our launch in October,
2001. There were many things to be proud of in 2017 and you can read
about some of them in this annual review of the year. However, I always
keep coming back to our core principles and the reason we exist which is to
provide the kind of support to people with RA and JIA which I wish I and my
family had had access to when I was diagnosed nearly 40 years ago.
Every week we get emails from people who have been helped by us in one way or another. Often it’s our wonderful helpline team who get appreciative emails from people they have spoken to, sometimes at the end of their tether, in crisis or suffering high levels of anxiety and worry about their diagnosis and what the future might hold. Our helpline are usually the first port of call from people seeking support and information. Here are a couple of examples which really exemplify the kind of help we provide on a daily basis:
It makes a great difference to our passionate and hard-working team of people working in the NRAS office to get feedback like this. It’s why everyone comes to work every day and goes the extra mile to make the difference we know matters to people affected by these painful and debilitating autoimmune diseases.
We put massive effort into the creation of the many resources we provide which support people to learn about their disease and become a better self-manager. As we only interact with our healthcare team for a very few hours a year, the vast majority of the time, we are alone with our disease, even though we might be surrounded by family and friends, and have to figure out
how best to cope day to day with the burden of the disease itself and the treatment burden, which can be quite complex and all-consuming at times. Some of our
new resources published in 2017 have won awards and you can read about this later in this review.
I am extremely proud of our achievements in 2017 and of the whole NRAS team who always go the extra mile because it really matters and makes the difference to those we serve. We shall continue to provide the best support for people with RA and JIA, their families and the health professionals who care for them.
Ailsa Bosworth MBE
I have only phoned the helpline a couple of times and the operators are
fabulous. Very calm, understanding and professional. It’s not like phoning a big call
centre but more like phoning a friend. A friend that will listen and help. I can’t recommend
and thank them enough. A fabulous resource and brilliant service – I feel lucky to know
they are there if I need them.
I know how incredibly hard you and others at NRAS work and am hugely supportive of
your fantastic work, which I can see is of great benefit to many patients. I find the publications
are a fantastic resource.
Rheumatology Occupational Therapist Brighton General Hospital
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WHY WE EXIST The National Rheumatoid Arthritis Society is the only patient-led specialist
organisation providing support and advocacy specifically for the >400,000
people in the UK living with rheumatoid arthritis and the >12,000 children
and families living with the impact of Juvenile Idiopathic Arthritis, their
carers and the health professionals who treat them.
We take pride in the fact that everything we do and stand for is patient-led. Our team works closely with Members, Volunteers and the wider populations of people with RA and JIA, our Board and our team of Medical and Allied Health Advisors to fund, design, co-ordinate and deliver a wide range of high quality services for all affected by RA and JIA.
We also work hard to influence and shape the policy and service environment to ensure equitable access to the best treatment and care for all with RA and JIA.
We know that access to best care and treatment is not the reality for many and there are several reports, research papers and audit data to evidence this. Our Policy and Public Affairs work is vital in ensuring that those who take decisions about health and social care are informed of the impact that RA and JIA have on lives and wider society and understand the value that access to the best care and treatment brings to individuals, the NHS, the Exchequer and whole communities. Seeing the right person, with the right skills at the right time in the care pathway, improves outcomes, changes lives and saves money in the long term.
OUR VISIONSupporting all with RA or JIA to live life to the full.
OUR MISSIONWe will:
¡¡ Support everyone living with the impact of RA and JIA at the start and at every stage of their journey
¡¡ Inform – to be the first choice for reliable information
¡¡ Empower all to have a voice and take control of their RA or JIA
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RAISING AWARENESS OF INVISIBLE DISEASES Raising awareness of RA and JIA to a mass audience as well as raising the
profile of NRAS to those within the RA and JIA communities is vital and
forms a core part of our daily work.
Raising awareness of RA and JIA as significant, but invisible conditions, is a key focus for NRAS. This is a two part process. Firstly, we must raise awareness of RA and JIA to a mass audience (the general public) who have never heard of or know little of the conditions, and secondly, we need to raise the profile of NRAS as the ‘go-to’ organisation for support and information for those within the RA and JIA communities, including those who live with the conditions, health care professionals who treat them and friends and families who provide so much valuable support. There is a third, and extremely important component to raising awareness in the above ways. Rapid diagnosis and treatment following onset of symptoms reduces the irreversible bone and joint damage that can occur quickly if the disease is not caught in the very early stages. By raising awareness of the early signs and symptoms of RA and JIA amongst the general public, we will help to reduce the delays which research and audit have shown to be significant in enabling people to be treated within 12 weeks of onset of symptoms.
Friday 9th June was Wear Purple for JIA day and was a great success surpassing expectation raising much needed funds to support JIA at NRAS but more importantly raising awareness of childhood arthritis. In 2016, 13 people and their friends signed up and raised £6108 but in 2017 that rose to a magnificent 176 people registering for Wear Purple activity packs, raising a marvellous £22,000!
Sometimes to make the invisible visible you have to really make sure you grab people’s attention and that’s what we did when raising awareness of the early symptoms of rheumatoid arthritis out on the streets of Reading, Oxford and London with a 12 foot robotic hand! This was a collaboration with the Oxford Academic Health Science Network and the filmed footage has been viewed by over 1800 people.
One of the most effective ways we’ve been raising awareness of the “hidden” symptoms of RA is by the Behind the Smile campaign. In total we’ve had over 100,000 views of these films.
Behind the Smile
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Total clicks:Over 20,000
Number of users that used the RAAW Facebook Frame:
4,000
Members’MAGAZINE
SUPPORT OUR FUTURE
A gift in your Will helps NRAS to build a
better future for those with RA and JIA
NRAS LOTTERY
Join the NRAS Lottery
Find out how on p30
GET IN TOUCH
www.nras.org.uk
01628 823 524
PLEASE READ & SHARE
Media coverage:
21 hits3 national1 lifestyle
17 regionalnewspapers
Number of social media posts tagged with
#behindthesmile
Over 700
RHEUMATOID ARTHRITIS AWARENESS WEEK 2017Broadening perceptions, knowledge and understanding of RA –19-25 June
Facebook Reach:
535,439
(126% higher than 2016)
Number of Retweets:
403
new social media followers
Over 600
Over 500 RA Awareness Packs sent out
#behindthesmile video views totalling over
100,000
NRAS – THERE FOR THE ENTIRE FAMILY Katy Pieris and her family raise awareness through sharing their
personal stories.
NRAS partnered with My Life films, to produce a short video about NRAS through the eyes of one of our Members and her family.
Katy Pieris, who co-ordinates the Croydon NRAS Group, talks about her diagnosis and how the Group, together with her family, have supported her through her journey. Her sister Lucie and husband Marc both talk about NRAS and how having the correct information and support has helped them all talk about RA more openly as a family.
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RA takes a lot to manage – from lifestyle, to mental health, and various courses of treatment. But if we focus on giving patients
the tools to be involved in setting their own goals alongside their HCPs and their families,
and if we make care about the patient, not the process, all of us with RA
can lead full and happy lives.
Katy, age 34 diagnosed in 2011
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SUPPORTED SELF-MANAGEMENTWhat is it and why is it important?
‘Living Better with RA’The above is the title of a new booklet we launched in 2018 and while this annual review relates to the preceding year we wanted to name-check it because “living better with RA” really sums up what supported self-management is all about.
What is supported self-management?Active self-management is about using a set of skills that can be learned, rather than just relying on what health experts, such as doctors, can offer the individual living with a long term condition like RA. It’s also about approaching the challenges and burden that living with an incurable health condition such as RA or Adult JIA brings, in a helpful and constructive way. It really is a crucial part of someone’s care, and their attitude to their condition and how they decide to embrace it, or not, that will affect their longer-term outcomes. The word ‘supported’ in this phrase is also crucially important because it means getting help to learn new skills and ways of coping so not to be left struggling on their own trying to work out how best to help themselves. That’s where NRAS comes in to support the person and their healthcare team as well as their families. Self-management works best when there is the right support, at the right time and delivered in the right way.
Why is it important?It’s important because people who are effective at self-managing generally have a better quality of life and better disease outcomes. That makes a big difference to the individual living with the disease, but it also benefits family and friends, work colleagues, the NHS and wider society. Everything we do at NRAS is about providing people living with RA or JIA and the healthcare teams with high quality, evidence based tools, resources, information, technology and support that can lead to improved self-management. People with long term conditions like RA and JIA interact with their healthcare teams for only a very few hours a year. The rest of the time they’re on their own living and coping with their disease on a daily basis and managing the daily challenges and burden of the disease itself and its treatment.
In practice, self-management is about being able to manage disease, treatments and day-to-day life in the best possible and most realistic way to suit individuals’ lifestyles. It’s not about ignoring or denying a health condition, nor is it about allowing that condition to dominate someone’s life, rather it offers a more constructive way of living that has been shown to improve long-term outcomes. What this means is that by having a helpful understanding of the condition, being able to recognise and manage the emotional and physical impact and being able and willing to make adaptations to lifestyle and the approach to doing things, people can take back control of their life and get into the driving seat again.
When someone has a condition like RA, they’re already managing it in lots of ways, but there are also specific skills people can learn to gain more confidence and knowledge. Becoming a good self-manager takes time and practice; it’s rather like learning any other skill, such as driving a car. With the right skills and a positive approach, which NRAS can help with, individuals can become effective self-managers who feel confident to make the decisions and changes which can affect their own health in a positive way.
NRAS – There at diagnosis and every step of the way on the RA or JIA journey.
FACTS, FIGURES AND GROWTH 2017We launched JIA-at-NRAS in 2014 when we when we launched our unique
website – www.jia.org.uk
Over 2 years of preparatory work preceded the launch of the website with the team from NRAS visiting over 33 rheumatology and paediatric rheumatology units across the UK and talking to many families and young people affected by JIA, as well as health professionals, NHS Managers and Commissioners involved in delivering service. This preparatory work culminated in the publication of a 90 page report entitled JIA in Focus and provided NRAS with a blue print to start our children’s service. Starting a new service takes time to establish and make grass roots contacts, reaching out to families affected by JIA and raising awareness of the new service with health professionals, policy makers and key opinion leaders. Now 3 years on, all the hard work is demonstrated in the increased reach substantiated by the following statistics for 2017.
Our key publications which come in a convenient pack for parents and families, ‘JIA Explained’ and ‘Managing JIA in School’ are also the de facto information for families used by specialist paediatric centres and adult rheumatology centres who see children with JIA, across the UK.
Our family days and events for young people are now a staple part of the paediatric rheumatology community and we are gearing up to set our strategic direction in JIA for the next 3-year plan which we will be starting work on in 2018.
The results below speak for themselves and we congratulate the JIA team which incorporates major support from Marketing and Communications, Policy and Public Affairs and Fundraising for an excellent year in 2017.
Social Media
201720162015
2.8K2.6K2.4K2.2K
2K1.8K1.6K1.4K1.2K
1K0.8K0.6K0.4K0.2K
0
21
20
8
25
12
16
19
92
23
76
64 99
32
2 4785
46
118
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Facebook Twitter HealthUnlocked Website
42%GROWTH2017 vs 2016
10
11
Healthcare Professional Contacts
2017201620152014
240
220
200
180
160
140
120
100
80
60
40
20
0
12 2951
2184.3×GROWTH2017 vs 2016
Patient and Family Contacts
2017201620152014
1000
900
800
700
600
500
400
300
200
100
0
40 111200
8904.5×GROWTH2017 vs 2016
Website Traffic
201720162015
40,000
35,000
30,000
25,000
20,000
15,000
10,000
5,000
0
13443
23420
3560552%INCREASE 2017 vs 2016
Resources Given and Requested
201820172016
9,000
8,000
7,000
6,000
5,000
4,000
3,000
2,000
1,000
0
3000
65008000(Projected)
116%INCREASE 2017 vs 2016
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THE RICHARDSON FAMILYMany families have come to rely on the great support given by JIA-at-NRAS,
notably with many issues around support for a child with JIA at school
where often, the understanding of the condition and what changes need to
be made to help a child, are little understood.
Equally, NRAS has been fortunate to benefit from some amazing fundraising done to support the work we do by such families throughout 2017.
We’d like to tell you about Lisa Richardson and her family. Lisa’s son Finlay, age 14, has JIA and her sister, Sarah, has a daughter, Millie who also has JIA. Lisa and family held a JIA Charity Ball on Friday, 23 March to raise money for NRAS, increase awareness of JIA and educate others about this debilitating condition which we were very happy to support.
It was a hugely enjoyable evening where guests participated in a raffle and auction, listened to music from a live band – The Follicles – and ate a delicious dinner. The event was held at The Hallmark, Stourport Manor Hotel, Worcester, and raised £5700 in total. It was quite overwhelming to see the amount of people who bought tickets and pledged their support for JIA-at-NRAS. Andrea Keenan and her daughter Hollie, aged 7, travelled all the way from Redcar, a 4.5 hour drive, to support the ball. Hollie and Andrea are also amazing ambassadors for JIA-at-NRAS. Hollie takes every opportunity to encourage and motivate people to do more. For the ball she wrote and read out a beautiful and poignant poem about what it’s really like to live with JIA. Over 200 people listened and were in awe of her strength and determination.
Lisa and her family did the most amazing job in organising this event for us.
The whole family are passionate in their endeavours to raise the profile of JIA and Lisa’s and Sarah’s mother, Cora cycled over 100 miles to grow awareness and funds for JIA-at-NRAS and raised over £2,000.
This kind of support is essential for NRAS to continue to provide the range of high quality services and resources for families living with the impact of JIA. We get no statutory funding and are totally reliant on fundraising and donations. We would like to extend enormous thanks to Lisa, her family and all the other wonderful families who supported the charity during 2017.
Lisa, Sarah, Finlay and Millie pictured here receiving their “Outstanding Fundraiser Star” awards in the House of Commons.
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THE VARIED WORK OF NRASAmbassador network Our valued Ambassadors continue their volunteering work for NRAS in Scotland and Wales, and from 2017, also in Manchester. The Ambassadors represent NRAS in the devolved Parliaments and Assemblies, at events across the nations and provide crucial feedback to NRAS about rheumatology services in their areas, which help to shape NRAS campaigns, which aim to improve access to best care for all.
NRAS stepped up its campaign for a full paediatric rheumatology service to be implemented in Wales (Cardiff), with Ambassadors hosting a drop-in session at the Welsh Assembly. This was followed by a debate in the Welsh Assembly, where a motion was passed for our campaign with cross-party support.
In Scotland, our Ambassadors have worked with the Scottish Society for Rheumatology to help shape the RA services in Scotland, including the making of a video launched by NRAS to encourage patients across the country to become involved. The Ambassador network also continues to be involved in the Cross Party Group for Arthritis and Musculoskeletal Conditions.
NRAS launched a new Ambassador network in Manchester in 2017 following devolution of health and social care to the new Greater Manchester Combined Authority. Our three Ambassadors in Manchester were recruited in 2017 and attended a two day training at NRAS and were subsequently involved in the planning and implementation of a meeting between three merging NHS Trusts, ensuring that the patient view is heard during any changes and developments to rheumatology services in the new Single Hospital System.
Coalition workCollaborative working is something that we strive to do on a regular basis. Working with other diverse organisations – patient groups, professional bodies such as the British Society for Rheumatology and the Royal College of GPs, industry and pharmaceutical sector as well as a range of Coalitions such as the Disability Benefits Consortium, helps NRAS to maximise its reach and its key messages as well as strengthen our common aims, making our collective voice louder and stronger together.
By working this way, we can collaborate on mutual agendas to deliver consistent messages to governments, health authorities, commissioners and other decision-makers. NRAS is active within a large number of small and large coalitions, and works informally with other partners on local, regional and national campaigns. The following are some of the key coalitions in which we worked in 2017:
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Arthritis and Musculoskeletal Alliance (ARMA)ARMA is an umbrella group for organisations working in the MSK arena, sharing knowledge and best practice amongst organisations. NRAS works within ARMA to address the specific needs for people with RA and JIA and to ensure these are promoted within wider MSK priorities.
Disability Benefits Consortium (DBC)With the welfare system currently going through a huge overhaul, NRAS works alongside 60 other organisations within the DBC to ensure that people with disabilities are receiving the benefits that they need and deserve to live their lives to the full. In 2017, the DBC ran high profile campaigns for Personal Independence Payments (PIP), about which our helpline receives a particularly high number of calls.
Fit for Work (FFW) Coalition With a particular focus on work in 2017, the FFW Coalition enables NRAS to promote its patient-focussed work agenda amongst other experts, academics, professional bodies and industry in pushing the Government for appropriate reforms to health and work in the MSK arena.
Prescription Charges CoalitionAlong with Parkinson’s UK and Crohn’s and Colitis UK, NRAS co-chairs the Coalition, which has 40 members in total. In 2017, we focussed on promoting the findings of our ‘Still Paying the Price’ report, which highlighted the detrimental impact that prescription charges have on the health and well-being of people with long-term conditions.
Our vital policy and public affairs workNRAS is widely known for its effective policy and public affairs campaigns as influencing and shaping the policy and service environment to ensure equitable access to the best treatment and care for all with RA and JIA is a key strategic aim.
With three-quarters of people diagnosed with RA when of working age, the impact of RA on work is a major issue for many. In recent times, with changes from Disability Living Allowance to the Personal Independent Payment, calls to our helpline on this subject have increased significantly.
Therefore, in 2017, NRAS undertook a major survey of its members and non-members 10 years on from our last survey on work in 2007, to explore the impact of RA and JIA on work in collaboration with researchers from the University of Manchester and see, what, if anything, had changed. Over 1,500 people responded to the survey, which enabled NRAS to explore important issues such as barriers to remaining in and returning to work, benefits, work performance and the help and advice that is available. Sadly, little had changed and many of the problems revealed in 2007 remain. The report was launched in Parliament with the then Minister for Disabled People, Health and Work, Penny Mordaunt MP, discussing the Government’s proposals to help people with disabilities back into work.
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Our continued involvement in the Department of Health and Department for Work and Pensions’ Joint Work and Health Unit has enabled NRAS to influence policy, ensuring that the RA patient voice is heard at a high level in Government.
On behalf of our Members, NRAS continues to respond to government (Westminster and devolved) consultations which can affect treatment, care and services for people with RA and JIA. One such example was the Belfast Health and Social Care Trust’s consultation on the automatic switching of all RA patients on biologics to biosimilars. Responses to consultations and follow-up campaigns help to raise awareness of the diseases and ensure that the development of policy is not to the detriment of people with RA or JIA.
Working with all key StakeholdersThe health professionals who treat people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis and the pharmaceutical industry who often provide training for allied health professionals, are two of the key stakeholders we interact with and support on a regular basis throughout the year. This has many benefits as it ensures that the health professionals are aware of, and kept up to date with, all the many diverse resources we can provide to support their patients.
Here are some key examples of this kind of work carried out in 2017:
¡¡ Representatives from NRAS presented at both the BSR rheumatology conference in the UK and EULAR Congress in Madrid
¡¡ We provided a guest lecture for rheumatology nurses at the ASPIRE course run by Keele University
¡¡ We contributed to global meetings on access to biosimilars including the GABI (Generics and Biosimilar Initiative)
¡¡ We undertook a number of ‘lunch and learn’ sessions for different pharmaceutical company workforces
¡¡ Collaborated on a number of activities with the Oxford Academic Health Science Network
¡¡ Global collaborations with patient organisations from across the world as part of RA Matters (Eli Lilly initiative) and RA NarRAtive (Pfizer initiative)
¡¡ Continued our work on the NHSEngland National Biosimilars Programme Board
¡¡ Presented at health professionals’ training events e.g. West Midlands Rheumatology Forum, Response Nurse event, National Forum for Patient Centred Pharmacy, Sustainable Healthcare Conference
¡¡ Were part of the Expert Advisory Group to the Work and Health Unit (DWP/DH) (ongoing)
Programmes delivered for Health Professionals and patients¡¡ The Rheum2talk – NRAS one day workshops for rheumatology healthcare professionals on
the topic of the impact that RA has on patients’ emotional and intimate relationships, were conducted in London, Bristol, Newcastle and Glasgow.
¡¡ Delivered supported Self-Management courses for people with RA in Central and East Sussex, Scotland and Newcastle
New resources Provision of expert and evidence based information and support, free of charge, on a wide variety of subjects and in different formats to aid health literacy is at the heart of our core service. Rheumatology healthcare professionals across the UK rely on NRAS publications for sharing vital information with their patients about all aspects of living with rheumatoid arthritis or juvenile idiopathic arthritis. Many of these resources are now being requested by other patient organisations across the world. We shall be exploring the potential to licence our information resources during 2018.
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In 2017, we launched the following new resources
¡¡ The new NRAS publication ‘Medicines in Rheumatoid Arthritis’ was launched at the BSR conference in April 2017, and has been in continuous high demand since then. It won ‘Highly Commended’ at the British Medical Association Patient Awards in 2017, as did our booklet ‘Managing JIA in School’.
¡¡ NRAS launched phase 2 of the Know Your DAS app which includes information and support on medicines adherence.
¡¡ Behind the Smile version 2 – the impact on the family video was launched on World Arthritis Day in October. With over 36,000 views, it has proved a very successful campaign.
¡¡ We also launched an animated information video addressing the most commonly held misconceptions around taking methotrexate which rheumatology nurses and allied health professionals have found to be incredibly helpful for reassuring patients about taking this medication.
Supporting ResearchNRAS undertakes its own social and lifestyle research but also supports a great many clinical and academic research projects and studies across the UK and Europe aiming to improve the lives of all those living with RA and JIA.
Academic institutes that we have worked with during the year in a variety of ways include:
We also contributed in a more hands on way by providing patient representation either on steering committees, patient recruitment or patient participation groups for example the following studies:
APPiPRA study
MATURA/STRAP trial
QUASAR Sleep study
BSR/HQIP Early Arthritis Audit
Medicinesin Rheumatoid Arthritis
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CHANGING MINDS, CHANGING SERVICES, CHANGING LIVES
Information and SupportDuring 2017, the Information and Support team received and responded to over
2000 contacts to the helpline. The majority of these (around 70%) were phone calls, with the rest being primarily email and some queries via social media (Facebook and Twitter). Contacts via social media have more than doubled in the last year.
In addition to this, thousands of posts on the NRAS HealthUnlocked forum were read by NRAS staff generating over 250 individual replies that are then read by
thousands more people across the world with many commenting on the replies too. The NRAS HealthUnlocked page had 450,000 unique users in the last quarter of 2017,
40% within the UK, 40% based in the USA with the remaining 20% from the rest of the world including Canada, India, Australia, Spain and Ireland.
Work to keep our booklets and articles up-to-date and current is continuous as well as writing regular content for the NRAS Members’ magazines, developing new information
sheets and posting interesting data out through our social media channels. In 2017 we developed a new helpline audit survey with a group of clinicians, the initial results of which will
be published in 2018.
MembershipMembership continues to receive positive feedback regarding the interesting and informative articles in our magazines and Members e-news bulletins. Members really appreciate being able to connect with other people through the NRAS Pen Pals scheme and being inspired by others sharing their stories via the “My Story” section of the magazine and website. Membership has continued to grow year on year with close on 5,400 Members by the end of 2017 including free healthcare professional Members of almost 1300. A new strategy is planned for 2018/19 to streamline membership processes and drive membership growth.
Comment from a new NRAS Member:
Heather joined as a member when she was struggling on her current medication and she really enjoys the benefits of NRAS membership and reading about others with similar issues stops her feeling isolated. She’s doing much better now.
My telephone conversation today lifted a great weight off my shoulders. The person I spoke to knew empathetically how I felt,
showed clear understanding of all my concerns, answered my questions with insight and
depth of subject knowledge.
Thank goodness I rang as it’s turned my thinking to a positive outlook.
I cannot tell you how very much I appreciate your time and effort in responding to my
email. I had to share it with my husband, who is completely stunned with how you took the
time to explain everything for me. I will indeed contact the consultant and proceed as you
suggest. Thanks again so very much!
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WORKING WITH THE PHARMACEUTICAL INDUSTRYDuring 2017, we have had numerous productive collaborations with
industry partners working with all the following over the year.
ACKNOWLEDGING THE SUPPORT OF TRUST & GRANT SUPPORTERS We would like to acknowledge the following trusts for their generous
support in 2017:
The Bernard Sunley Charitable Foundation
The B G S Cayzer Charitable Trust
The Droitwich Brine Fund
E C Graham Belford Charitable Settlement
Garfield Weston Foundation
The JGW Patterson Foundation
The Leathersellers’ Company Charitable Fund
The Monument Trust
Morrisons Foundation
PF Charitable Trust
We would also like to thank the many small trusts and foundations that very kindly supported NRAS’s work in 2017
PHARMA INCOME BREAKDOWN FOR 2017
Abbvie £46,920.00
BMS £500.00
Covance £400.00
Lilly £55,064.20
GSK £1000.00
Janssen £1180.00
MSD £375.00
Pfizer £18,885.00
Roche £0.00
Samsung £909.81
Sandoz £7,720.00
Sanofi £7,918.90
UCB £2,700.00
TOTAL £143,572.91
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WHERE OUR MONEY COMES FROM…NRAS receives no statutory funding and relies entirely on funds raised
through voluntary donations from individuals, trusts and companies, as well
as from funds raised through membership, events and legacies.
We are extremely grateful for the incredible generosity of our donors, fundraisers and Members for their support and help in raising funds.
Corporate (including pharmaceutical income) | 11%Corporate funding allows us to work on specific projects during the year as well as call on some of the expertise within these companies e.g. video production, marketing etc.
Trusts, Grants & Contracts | 44%We have been generously funded with grants from Trusts and Foundations toward a range of NRAS services, including our JIA-at-NRAS service and we have continued provide our commissioned services through NRAS Community Services Limited in a number of locations. These are principally supported self-management courses which are commissioned by Clinical Commissioning Groups or NHS Trusts
Legacies & Gifts in Memory | 15%We are extremely grateful to all those who have chosen to make a lasting difference, leaving NRAS a gift in their Will or by making a donation in memory of a loved one
Donations | 10%We have received many generous donations from individuals, Members, Friends of NRAS
and lottery participants enabling NRAS to continue to be there for all those who need our support
Events & Community | 12%We had a record number of people taking on sporting
challenges and organising activities to raise funds for NRAS including running, cycling, adventure challenges,
community events and NRAS led activities, including #wearpurpleforjia which raised over £22,000
Income (Investments & interest) | 4%
A small proportion of our income was derived from investments and interest
Research, Consultancy & Studies | 3%
Income received from research projects and academic studies we participate in and from speaking fees
Gift Aid | 1%We receive an additional 1% in income from those
who have chosen to Gift Aid their donations
11%
15%
10%
12%
4% 3%
1%
44%
Total Consolidated
Accounts for
2017 (NRAS and
NRAS Community
Services Limited
(trading company),
£1,239,756
21
OUR WONDERFUL NRAS FUNDRAISERS
Fiona’s Fundraising Story‘NRAS have been a great support to me
throughout my illness.’
Fiona first raised money for NRAS in memory of her dear friend Marina who sadly died aged just 39 from complications of her Rheumatoid Arthritis (RA). Despite a lung transplant she passed away leaving behind a husband and three children. She was dearly loved and is sorely missed.
In 2013 Fiona was given the devastating news that she herself had RA. She was struck down virtually overnight leaving her immobile and unable to do even simple things like walking, making drinks, preparing meals and taking baths; things we take for granted.
Following a plethora of medications, physiotherapy and hydrotherapy slowly she gained control of her disease and her mobility returned. In addition to essential medication, her consultant suggested swimming and cycling to improve mobility; amazingly it worked to such an extent that Fiona was able to complete her first triathlon a few years later, fundraising for NRAS, who have supported Fiona throughout.
Fiona is one of our amazing fundraisers and an inspiration to many who are struggling with RA.
£46,215
£22,758
£17,524
£4,425
£7,053
£2,044 £1,072£1,944
£9,074
£9,480
NRAS Tea Parties
Cycle Events
Ultra & Adrenaline Challenges
Community General Events
Community Challenge Events
JIA Fundraisers
Evening of Cards
Wear Purple for JIA
Running Events
NRAS Christmas Carol Concert
22
Message from our Chair
GORDON TAYLORNRAS has made good progress in 2017, raising £1,239,756 and spending £1,246,376 in delivering our patient support services, continuing the year on year increase in support and empowerment of people with JIA or RA as well as supporting their health and care providers. What makes the increase in activities even more remarkable is that it was achieved in a challenging environment for fundraising, exacerbated by some difficulties in recruiting roles within the charity towards the end of the year e.g. Head of Fundraising.
NRAS is clearly progressing well through the 2016-2019 Strategic Plan, with the team focussing on 5 key aims under the NRAS Vision of, ‘Supporting all with RA or JIA to live life to the full’:
1. Increase public awareness & understanding of RA & JIA
2. Improve the capacity of more people with JIA & RA to self-manage and improve ability of health & care providers to support them to do so
3. Increase NRAS fundraising capacity to reach, engage and provide support to more people across the UK
4. Make our services more visible, relevant and accessible
5. Influence and shape the policy and service environment
Staff and Volunteer Members have done a truly fantastic job throughout the year, with many activities contributing to meeting these multiple aims. Some of the highlights were:
¡¡ the Behind the Smile campaign during RA Awareness Week
¡¡ the Work Matters Survey Report publication that highlighted the issues facing those in the work force living with RA or JIA
¡¡ Producing award winning booklets ‘Managing JIA in Schools’ and ‘Medicines in Rheumatoid Arthritis’
In the area of commissioned services, NRAS Community Services Limited (NCSL) experienced challenges as programmes were impacted by lack of NHS Funding as well as changes in personnel within Clinical Commissioning Groups (CCGs) and Healthcare Trusts.
All NRAS departments have exceeded many of their performance targets set for 2017, NRAS website traffic alone has more than doubled and the JIA-specific site visits tripled in 2017.
The Board of Trustees is proud of the impact NRAS has had on influencing nationwide as well as local policy and the positive impact it has on individual people’s lives. By being the only UK patient organisation with such a targeted focus the Board believes that this is the key to the charity’s successes.
Governance has also been high on the Trustees’ agenda in 2017. Transparency, accountability and giving people and organisations the confidence that the funds they donate is being maximized and spent appropriately, is critical. With several new Trustees joining over the past two years, we have a dynamic, experienced, multi-skilled team that is working well with the Management Team. I would like to thank the Board for their excellent discussions and rigorous debate to ensure the success and sustainability of the charity. In particular, Steve Crowther for his role as interim chair until my election this year, and his continued work as Treasurer Trustee. The charity is in a strong financial position with potential for increasing income as well as robust reserves of approximately ten months of operating costs, well ahead of our target of retaining the recommended six months.
In terms of managing risk and ensuring the long-term sustainability of NRAS, the Board of Trustees and the Management Team have agreed seven areas of risk management and have a detailed Risk Register and mitigation plans set up for each area. We regularly review one or more of the Risk Registers at our Board meetings so all are scrutinised at least once per year, and actions agreed as required, to keep the charity on track and in good health.
In conclusion, I would like to thank everyone for the positive impact they continue to make; to thank Ailsa, our truly inspiring CEO, her Management Team and all the NRAS staff, NRAS Members, Volunteers, Medical Advisors and finally, our much needed and greatly appreciated supporters and donors.
23
THE TEAM BEHIND NRAS 2017Ailsa Bosworth . . . . . . . . . . . . . . . . . . Founder CEO
Anne Gilbert . . . . . . . . . . . . . . . . . . . . JIA Services Manager
Beverley Briggs . . . . . . . . . . . . . . . . . . Senior Information and Support Coordinator
Brianna Gumb . . . . . . . . . . . . . . . . . . . Fundraising Coordinator
Bronwen Cranfield . . . . . . . . . . . . . . . Community Fundraiser
Caroline Pryer . . . . . . . . . . . . . . . . . . . Information and Support Coordinator
Clare Jacklin . . . . . . . . . . . . . . . . . . . . Director of External Affairs
Dawn Bamforth . . . . . . . . . . . . . . . . . Local Services Supervisor – East Sussex
Dawn Waterman . . . . . . . . . . . . . . . . Trust & Grants Fundraising Manager
Emma Sanders . . . . . . . . . . . . . . . . . . . Individual Giving and Membership Officer
Gill Weedon . . . . . . . . . . . . . . . . . . . . . External Affairs Coordinator
Ian Hayward . . . . . . . . . . . . . . . . . . . . . Director of Finance
Karen Keech . . . . . . . . . . . . . . . . . . . . Local Services Supervisor – Central Sussex
Katie Kent . . . . . . . . . . . . . . . . . . . . . . . Web & Digital Media Assistant
Kim Fitchett . . . . . . . . . . . . . . . . . . . . . RA Services Engagement and Outreach Supervisor
Lorraine Price . . . . . . . . . . . . . . . . . . . . EA to CEO
Matt Bezzant . . . . . . . . . . . . . . . . . . . Public and Policy Affairs Manager
Michele Gagie . . . . . . . . . . . . . . . . . . . Finance Administrator
Michelle Vickers . . . . . . . . . . . . . . . . . Head of Fundraising
Phil Baker . . . . . . . . . . . . . . . . . . . . . . . Director of Commissioned Services
Sally Wright . . . . . . . . . . . . . . . . . . . . . Head of Marketing and Communications
Shivam Arora . . . . . . . . . . . . . . . . . . . . Web and Digital Media Officer
Tammy Mallowan . . . . . . . . . . . . . . . . Office Administrator
Val Eyre . . . . . . . . . . . . . . . . . . . . . . . . . Events Fundraiser
Victoria Butler . . . . . . . . . . . . . . . . . . . Senior Information and Support Coordinator
24
PATRONS, TRUSTEES AND ADVISORSPatronsThe Rt Hon Theresa May MP, Prime Minister and Member of Parliament for Windsor & Maidenhead
Professor Gabriel Panayi, Emeritus Professor of Rheumatology, Kings College, London
Professor Iain McInnes, Professor of Experimental Medicine and Rheumatology and Director of Institute (Immunology) & Scottish NRAS Patron
Mr Mark Liddell
TrusteesGordon Taylor (Chair)
Steve Crowther (Treasurer Trustee)
Kirsten Fox
Ellie Andrews
Zoe Ide
Richard Boucher
Jennie Jones
Simon Collins
Medical AdvisorsProf Peter Taylor (Chief Medical Advisor)
Dr James Galloway
Dr Martin Lee
Dr Marwan Bukhari
Dr Patrick D W Kiely
Dr Richard A Watts
Dr Richard Haigh
Dr Richard Reece
Dr Ruth Williams
Dr Stefan Siebert
Dr Yasmeen Ahmad
Prof Ernest Choy
Professor David G I Scott
Professor Iain McInnes
Dr Michelle McHenry
Paediatric Rheumatology Medical AdvisorsDr Athimalaipet Ramanan
Dr Clarissa Pilkington
Dr Gavin Cleary
Dr Jane Willock
Dr Janet McDonagh
Dr Jeremy Camilleri
Dr Jonathan Packham
Dr Madeline Rooney
Dr Nick Wilkinson
Dr Rachel Tattersall
Dr Kristina May
Prof Tauny Southwood
Sarah Hartfree
Allied Health Professional AdvisorsAnne Quinn
Diane Home
Kanta Kumar
Liz McIvor
Suzanne Davies
Robert Field
Alison Hammond
Liz Hale
Sandi Derham
William Gregory
Ground Floor4 Switchback Office ParkGardner RoadMaidenhead Berkshire SL6 7RJ
Helpline: 0800 298 7650
General: 01628 823 524
w: www.nras.org.uk
NRAS is a registered charity in England and Wales (1134859) and Scotland (SC039721). A company limited by guarantee. Registered company in England and Wales (7127101).
/nationalrheumatoidarthritissociety/jiaatnras
@NRAS_UK@JIA_NRAS
NRAS_UKhealthunlocked.com/NRAShealthunlocked.com/JIA
