Autoimmune diseases
Women are four times more likely to develop autoimmune diseases than men, and many of these conditions negatively affect quality of life.
This page provides information about autoimmune diseases, and our work in this area.
The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer
What are autoimmune diseases?
- Autoimmune diseases occur when the body’s natural defence system (immune system) mistakenly attacks healthy parts of the body.
- These conditions can have a wide variety of symptoms and have a significant impact on quality of life.
- Autoimmune diseases are thought to affect 1 in 10 people in Wales, and approximately 80% of those living with autoimmune conditions will be female.
Autoimmune diseases are complex, often affecting multiple systems and different parts of the body, so symptoms can vary in nature and in severity. Some people can have more than one autoimmune condition. They are also often progressive, meaning they can get worse if not identified early and treated. These conditions can have severe implications for overall health and wellbeing.
The causes of autoimmune diseases are not fully understood but possibilities include genetics, hormones, reproductive health events like puberty, pregnancy, and menopause (which may play a part in explaining why these conditions are much more common in women than men), and viral infection.
More research is needed to help us to understand why more women than men are affected, how to prevent these conditions from developing, speed up diagnosis, improve treatment options, or even come up with a cure!
Rare Auto-Immune Rheumatic Diseases (RAIRDs), including Lupus and Sjogren’s Syndrome affect approximately 9,500 people in Wales. At least 80% of those affected are female. Lupus is also more common in black and Asian women.
More information about the symptoms and treatments of autoimmune diseases can be found at on the NHS Wales website here.
What are we calling for?
Our overall aim is to raise awareness, reduce diagnostic delays, and improve access to specialist services for autoimmune diseases for patients in Wales.
We need to raise awareness of these conditions and particularly how they disproportionately impact females.
Many women often report their symptoms not being taken seriously, resulting in delayed or missed diagnoses. We want to ensure women’s voices are heard, and that the care offered to them optimal and timely.
Testing for autoimmune conditions can be a bit hit and miss, highlighting the need for more research into diagnosis and effective treatment options.
Given the seriousness of these conditions, it’s important that specialist care is available to patients who need it, no matter where in Wales they live.
In Wales, a lack of knowledge, understanding, and investment in autoimmune diseases results in delays in diagnosis and barriers to accessing treatment
In Wales, there is a lack of:
- Public awareness about autoimmune diseases and their impact
- Information about symptoms, treatment, and services for patients affected in Wales
- Research into autoimmune diseases and data specific to Wales – we need to know more about how women present with these conditions so we can better understand what causes them, their prevalence, and impact. We also need more research into how to best diagnose, manage, treat, even cure autoimmune diseases to improve the health and lives of all of those affected.
- Training or information about autoimmune diseases amongst healthcare professionals, resulting in diagnostic delays and not always effective management or joined-up care.
- Specialist clinics or services for patients in Wales with autoimmune diseases.
There are also postcode lotteries to specialist care, where only patients in certain health boards, or with enough disposable income to pay for private healthcare across the border (in England) can access it.
We need to:
- Make sure that autoimmune diseases feature as a priority in the NHS Wales Executive’s MSK (Musculoskeletal Conditions) Network’s strategic work programme, because this Network includes rheumatology services, which are usually responsible for patients with autoimmune conditions
- Ensure that the NHS Wales Executive’s Women’s Health Network and Plan apply a ‘women’s health lens’ to the provision of care for autoimmune diseases, as the majority of patients affected will be female
- Encourage investment in research in Wales to better understand autoimmune diseases and how patients living with them can be helped and supported
- Work to overcome postcode lotteries for patients, so that being in the ‘wrong’ health board doesn’t mean you can’t access the specialist care you need, even if that means your own health board having to help you to travel
- Make sure that alongside specialist centres of excellence for autoimmune diseases, there is also good care closer to home, so that patients living with autoimmune conditions but a long way away from specialists can be monitored and supported in between specialist appointments
- Make sure that all patients suspecting or living with a diagnosed autoimmune disease have access to good quality, evidence-based information and peer support.
Our champion: Wendy D
“I am driven by this overwhelming sense of frustration and anger, of injustice, at the fact that in England, lupus patients can request to be seen by a lupus expert or attend an NHS LUPUS UK Centre of Excellence, and they have a right to a second opinion. It is their choice.
Meanwhile, here in Wales we have no right to a second opinion from an expert of our choice and the system doesn’t routinely or easily allow us to access a specialist centre.
This is why I campaign with FTWW. “
What have we achieved?
Our campaign activity to improve the lives of those with autoimmune conditions is extensive. Some of our achievements are outlined below:
We raise awareness through events, media, training and fundraising
- We secure national media coverage of the issues facing autoimmune patients in Wales
- We facilitate autoimmune patients’ attendance at national events and conferences, where they have the opportunity to share their stories and expertise.
We take part in consultations, advisory boards and co-production of healthcare
- We’ve ensured autoimmune patients’ experiences featured in responses to Senedd Inquiries, such as ‘The Impact of NHS Waiting Lists’ and ‘Supporting Patients with Chronic Conditions’, and Welsh Government consultations on topics like ‘Putting Things Right’ and the ‘Duty of Quality’
- We’ve included evidence about autoimmune conditions and recommendations in the Women’s Health Wales Coalition’s 2022 report
- We’ve helped to facilitate meetings and focus groups with Llais, the independent statutory advocacy body for patients in Wales, to make them aware of gaps in services for patients across Wales with autoimmune diseases
- We’ve submitted evidence about autoimmune conditions and women’s health to the NHS Wales Executive’s MSK Network’s Quality Statement and Plan
- We’ve continued to make sure that autoimmune diseases feature in the NHS Wales Women’s Health Plan and related research in Wales
We engage directly with policy makers and researchers
- We’ve published a pan-Wales patient-led report about improving care and services for patients with rare autoimmune diseases like lupus and circulated to all health board Chief Executives in Wales
Related news and blogs
Experts call for urgent mental health support for people living with long term autoimmune diseases
A new study has highlighted the shocking mismatch of clinician and patients experiences of neurological and mental health issues in people with autoimmune rheumatological conditions. More than half of patients with auto-immune conditions experience mental health...
FTWW Responds to Health Minister’s Comments on Lupus Report
On Wednesday 3rd November, Mark Isherwood MS submitted a plenary question to the Senedd asking "How is the Welsh Government supporting people with autoimmune diseases?" (OQ57098). Mr Isherwood, who is Chair of the Cross Party Group (CPG) for Disability, followed up...
Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales
FTWW Calls for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales This Lupus Awareness Month, the patient-led women’s health equality charity makes 21 recommendations to Welsh Government in new report Fair Treatment for the Women of Wales (FTWW)...
Autoimmune disease stories
Advocating for yourself or someone else
Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.
We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.
Useful links and documents
FTWW's bi-lingual Autoimmune leaflet
This flyer provides a brief overview of our work in this area and why it is needed
Making the Case for Better Lupus and Rare Auto-Immune Disease Provision for Patients in Wales (2021)
Read this report compiled by FTWW
Women's Health Wales: A Quality Statement for the Health of Women, Girls and those Assigned Female at Birth 2022
Read more about our recommendations to the Welsh Government in this report by the #WomensHealthWales coalition
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