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RAIRDA launches survey of patients living in Wales

This survey has now closed. Thank you to everyone who completed the survey. We will be the publishing results, and our submission to the Welsh Government, shortly.

We have launched a new survey which aims to gather the views and experiences of people living in Wales with rare autoimmune rheumatic diseases (RAIRDs). This will support our submission to the Welsh Government as part of their consultation on new guidance for services for arthritis and long-term musculoskeletal conditions. This guidance is meant to advise and guide NHS health boards on the way they design services for people with these diseases, including RAIRDs like lupus, scleroderma, vasculitis and Sjögren’s syndrome.

Through sharing the results of this survey with the Welsh Government we hope to highlight the needs and experiences of people with RAIRDs and give a clearer picture of how people with these diseases are currently cared for, and their priorities, so that this informs new guidance.

This survey is anonymous. Most questions are optional and can be skipped if you prefer not to answer. There are 20 questions, most of which are multiple choice.

The information collected through our survey will be combined with the responses RAIRDA collected in 2018 and 2020 from patients across the UK, including Wales. Previous survey reports have been cited by Members of Parliament, clinicians, and researchers looking to improve the way people with these diseases are cared for. If you answered one or both of these surveys, please do fill this one in too – this survey builds on these and asks different questions specifically relevant to people living in Wales.

In addition to this survey, we are also looking to involve a small group of patients in commenting on our final submission to the Welsh Government. We hope this will make sure our submission is as guided by patients as possible. Please email RAIRDAuk@gmail.com if you would be interested in finding out more about what this would involve.

What is a RAIRD?

RAIRDA is a coalition of charities (Scleroderma and Raynaud’s UK, LUPUS UK, Vasculitis UK and the British Sjogren’s Syndrome Association). Whilst we tend to focus on the four conditions these charities represent, a full list of conditions which might be considered a rare autoimmune rheumatic disease (RAIRD) is below. If you have a diagnosis of any of these, and live in Wales, please do fill in our survey.

  • Systemic lupus erythematosus (SLE)
  • Antiphospholipid syndrome (APS)
  • Systemic sclerosis (scleroderma)
  • Sjogren’s syndrome
  • Relapsing polychondritis
  • Myositis/inflammatory muscle disease.
  • Undifferentiated or Mixed Connective Tissue Disease
  • Systemic vasculitis, including:
    • Giant cell arteritis
    • ANCA-associated vasculitis including: Granulomatosis with polyangiitis (Wegener’s), Microscopic polyangiitis, Eosinophilic Granulomatosis with polyangiitis (Churg Strauss)
    • Behcet’s disease
    • Takayasu’s arteritis
    • IgA vasculitis (Henoch-Schonlein purpura)
    • Cryoglobulinaemia

Avtar’s Story: “Setting up this amazing group has definitely been worth it”

Avtar Gill has Raynaud’s and Scleroderma and lives with his partner in Birmingham. His career within the training team of the AA ended early when he took redundancy due to the impact of his diagnosis, and he now works for Tesco on a part-time basis. Avtar is very active in supporting others who are living with scleroderma and set up the SRUK Support Group Midlands in 2018.

Before I turned 40, I was one of those people who never went to the the doctor and was not taking any medications. Today, it is a very different story. I was diagnosed with secondary Raynaud’s in 2016, after my symptoms began without warning when I had a sudden, severe Raynaud’s attack. I saw my GP, who made a referral to Solihull Hospital, where I was diagnosed with systemic sclerosis (scleroderma). Today, I am prescribed a cocktail of different medications to help manage this condition.

It was during the process of my diagnosis that I first reached out to try to find others who may be in a similar situation, and I soon realized that there was a gap at local level in finding peer support for people with Raynaud’s and Scleroderma.

After making some contacts online I eventually suggested that we all try to meet in person, so myself, my partner and three others met in a pub in Birmingham for the very first time. This was the beginning of the SRUK Support Group Midlands.

It was enlightening to talk to other people who were also living with Scleroderma and Raynaud’s, and since everyone felt the same way, we quickly agreed that our meetings should continue. Partners are still very welcome, as these conditions can cause a great deal of stress and anxiety, so all-round support remains incredibly important.

Our little group has quickly grown to around 30 members. We promote our meetings on social media including via our Facebook group; that is a closed group and a safe space to share any concerns or seek advice. As well as a place to meet new people and find friendship, the group is also somewhere to share our struggles, which can be very helpful since there may well be someone else who has been through something similar.

Before the pandemic, we would meet in person every quarter on a Sunday. During the first lockdown, we found that Zoom was the best platform on which to stay connected. When life eventually returns to normal, we will probably combine our online catch-ups with face-to-face meetings, so that we can include anyone who cannot get there in person but would still like to be a part of what we do. Setting up this amazing group has definitely been worth it.

If you would like to find support and connect with other people in your local area through an SRUK support group, please visit sruk.co.uk/find-support/support-groups or call Scleroderma & Raynaud’s UK on 020 3893 5998 to get started. Other RAIRDA member charities – LUPUS UK, Vasculitis UK and the British Sjögren’s Syndrome Association – also help support groups for people with other rare autoimmune rheumatic diseases conditions.

 

Sara’s story: “It was daunting to have to self-manage without much information so early in the scleroderma journey”

Sara was diagnosed with scleroderma in February 2020. She had been constantly ill with severe infections for two years, as well as symptoms of Raynaud’s, and suspected an autoimmune condition due to lupus being in the family. In January 2020, her GP sent off bloods, which came back positive for scleroderma and she saw a rheumatologist a week later.

My diagnosis came at a very difficult time; I was signed off work with fatigue, chronic insomnia and anxiety, my grandmother was diagnosed with terminal cancer and I had suspected COVID-19. It was a really overwhelming experience, especially with the pandemic and lockdown. After a difficult few months, things started improving and I was able to work from home.

I recovered relatively quickly from COVID-19, but unfortunately developed ‘long COVID’, it is thought that the scleroderma significantly delayed my recovery from the virus. My treatments and ability to see specialists have also been delayed and it was daunting to have to self-manage without much information so early in the scleroderma journey. Physiotherapy hasn’t yet been possible, and I had to wait to see a dermatologist, although I have quite significant skin issues. I could only get a video appointment, and was given a ‘diagnosis’ of possible psoriasis linked to my scleroderma, but this was without an examination.

Discovering the SRUK (Scleroderma and Raynaud’s UK) website was an absolute lifeline, and it was great to know that I wasn’t alone. I have been watching their various webinars and reading the myriad of information on their website and social media pages. This was often my only source of information, so to try and give something back, I have been actively supporting them by raising awareness – I was even featured on BBC News 24 and Radio 4 – which was nerve-wracking, but great to feel I was helping others. I have also fundraised through a sponsored walk and hope to be able to do more fundraising once lockdown has ended.

The lack of control that comes with my diagnosis scares me, but I try not to let it overwhelm me. I’ve been seeing a psychologist for several months, which has really helped my mental wellbeing, and helped me come to terms with my condition, which I knew nothing about before the diagnosis. However, it was a struggle to get access to formal health support to begin with.

Whilst I have started to feel more in control of my condition, there have been ongoing issues with my health that were made more difficult with COVID – I needed urgent gallbladder surgery last year but had to wait months; and then it was postponed due to lockdown. Luckily, I have had the surgery now, but it was a horrible experience having to wait for nearly six months whilst in pain…. a hardship I know so many people are currently facing. My grandmother also passed away before Christmas, and I had some challenges at work due to my condition, which just increased my stress level after an already difficult year.

I am determined to keep as informed and in control of my condition as possible. I’m also due to get married this year, so I’m hoping that restrictions might be lifted, and that this year will be much better than 2020. All you can do is try and focus on the positive things in life, and all the many opportunities we are lucky to have. Then, we can get through whatever life throws at us.

RAIRDA surveyed 1,300 people with rare autoimmune rheumatic diseases about their experiences during the COVID-19 pandemic, including asking about how their care had changed. We found that even as early as April and May 2020, 80% of people had experienced some kind of change or disruption to their care. Read the full report here.

Teresa’s story: “It is comforting to meet people who understand”

Teresa lives with Primary Sjögren’s Syndrome, as well as other autoimmune diseases. In this blog she talks about living with these during the COVID-19 pandemic and some of the support she has received.

I have been well supported during the pandemic via telephone consultations with my doctors and consultants. I was also able to email photographs of problems concerning my skin. These were assessed, appropriate remedies prescribed, and further blood tests requested. A practice nurse then took the blood in the practice car park so as to minimise my COVID-19 infection risks.

My hospital rheumatology department sent me the details of a rheumatology specialist nurse to contact in case I had any problems. I wanted some reassurance about receiving the vaccine and left an answer phone message. To my delight a doctor then called me to answer my questions.

My local support group for Sjögren’s has just started up again and has been excellent at passing on information and keeping the members up to date with events as they arise. It is comforting to meet people who understand the complexities of Primary Sjögren’s. We also exchange tips and suggest products that we have personally tried.

I have been shielding since March 2020. This has been hard as I am normally very involved with family & friends. It is difficult for others to comprehend my risks. As well as Primary Sjögren’s I have other autoimmune diseases and MGUS. The later indicates that I have too much of a certain para protein in my blood. This is checked every four months as there is the potential for MGUS to become Myeloma (bone cancer) and this also increases my vulnerability to COVID-19 & other diseases.

I have become more involved with R2P2, a patient research partnership, and am presently communicating with a PhD student as part of a research partnership. I have also taken part in other online research projects via Zoom. These engage my mind giving some order and focus in a life that is far from normal.

It is hard for others to understand what having a rare and invisible disease is like and to assimilate the consequences. It’s an enemy that stealthily attacks my own tissues, thereby reducing their ability to function adequately. The resultant dry eyes, mouth, skin, IBD, drug allergies, exhaustion, muscle, tendon & joint discomforts, constantly having to pace myself plus many other fluctuating symptoms are all unseen but make coping more unpredictable and difficult.

To the onlooker I appear normal and this can be frustrating. I think that during the pandemic most people affected by a rare disease will have at times felt misunderstood, lonely and afraid because the risks are real.

In my case the harsh reality is that I am immunoglobulin deficient which means that my body has potentially damaged the mechanisms that help to create a good response to the vaccine. Therefore, I am advised to shield until I can be tested to assess my anti-body response to the vaccine. Bad days are more difficult because for the past year there have not been the opportunities to divert the mood by engaging in outings, meeting family and friends, or even a trip to have a café break and for me these might not be possible as soon as I had hoped.

In Summer 2020, RAIRDA published a report based on 1,300 responses to a survey we conducted asking people with RAIRDs about their experiences during the pandemic so far. You can read this here.

Pam’s story: “It’s been difficult to accept that I can no longer do things that I used to love doing”

Ahead of Rare Disease Day we are publishing blogs from people living with rare autoimmune rheumatic diseases. Primary Sjogren’s syndrome is the designation given when someone is diagnosed Sjogren’s without having a prior diagnosis of another rheumatological condition. In this blog, Pam talks about living with the condition, how it’s affected her and how she has been able to manage it.

It was just by chance that my GP asked for an ANA (Anti-nuclear antibody) blood test. I hadn’t been feeling too well for a while, but I was shocked when the test indicated an autoimmune disorder and he immediately referred me to a rheumatology department.

They carried out a few more tests and decided I either had Sjögren’s or lupus, and I remember leaving that first consultation with the words, “it’s probably Sjögren’s” and being given a small booklet about it.

For many years before this I had experienced so many different irritating symptoms – IBS, joint and muscle pain, dry eyes, dry mouth and fatigue to name just a few. I felt I was just unlucky having to tolerate these, sometimes all at once, and simply tried to ignore them, but as time went on, they worsened. Now I was beginning to understand how this one rheumatic autoimmune disorder could cause all of them.

Research brought me to the BSSA (British Sjögren’s Syndrome Association), an organisation which offers support and organises group meetings. Even though I hadn’t officially been diagnosed yet, I decided to become a member and joined my nearest group. Meeting with others was so useful; Sjögren’s is rarely diagnosed and it can be very isolating, so it was helpful to hear how others managed. It actually took two years, and many more tests, before I was diagnosed with Primary Sjögren’s Syndrome.

My GP suggested I attend the Expert Patient Programme that our local NHS Trust was running. This is aimed at helping people with long-term chronic conditions learn ways to self-manage their symptoms, and Sjögren’s certainly has a lot of them. It gave me the tools to better cope with chronic pain, to know how to break my symptom cycle, and, more importantly, it has taught me that I am my personal Sjögren’s expert. As my GP says, I know my Sjögren’s better than anyone else.

It has been my experience over the years that different clinicians look at Sjögren’s in different ways; some have not come across it before, don’t fully understand it or see it as a very mild condition. Whilst some people have very mild symptoms, for others it is so debilitating it can greatly impair quality of life, as well as impacting on friends and family. From one day to the next I never know what symptoms will hit me. Sometimes it affects my whole body to the point where I feel it would be so good if I could just have a brand new one!

I tell as many people as I can, especially women, to look out for the signs as I wish I had known about it earlier. I have now learned what some of my triggers are and take action to try and avoid a flare up.

It’s been difficult to accept that I can no longer do things that I used to love doing. Over the years I’ve learned how to use positive thinking and mindfulness, to remember there is always something to look forward to and I always make sure that there is. I have discovered other activities that I can do and enjoy when I feel able.

There is life after a Sjögren’s diagnosis. It’s just very a different one from before!