Scotland must not leave people with long term conditions to manage alone

What does The Scottish Report tell us about how we're supporting people with inflammatory mediated autoimmune conditions (IMIDs)?

We’re living in a turbulent geopolitical landscape where so many lives, economies and communities are facing crises of one kind or another, not just in Scotland and the UK, but globally. With so much focus in the media on the revolving door of No. 10 currently, it’s easy to miss that Scotland’s NHS is under severe systemic pressure, marked by record waiting lists, workforce pressures and financial instability (much like elsewhere in the UK). While overall medical staffing has grown, staff burnout and an ageing population with increasingly complex health needs continue to stretch the system. However, behind every statistic is a person, and people living with serious long-term conditions are not routinely getting the care that they need.

Having lived with Rheumatoid Arthritis for over four decades, I know how deeply people value an NHS that is there when they need it. But for too many people living with long-term conditions, getting the right help still depends too much on where they live, how quickly their symptoms are recognised, and whether they are connected to support beyond the consultation room.

At a time when Scotland’s re-elected Government is establishing their priorities, I want to highlight some of the key issues experienced by people in Scotland with common inflammatory mediated autoimmune conditions  (IMIDs)  (circa 10% of the population), such as Rheumatoid Arthritis. Are people with IMIDs being diagnosed early enough, treated quickly enough and supported well enough to live the lives they choose, contributing to their families and society?

The answer from The Scottish Report, published by NRAS alongside Crohn’s & Colitis UK, Lupus UK, the National Axial Spondyloarthritis Society and the Psoriasis Association, is clear: Scotland has committed health professionals and strong patient organisations, but the system is still leaving too many people waiting, worrying and managing alone, and this has a major knock-on effect across employment, social care and the wider economy.

This is not a niche issue

The survey behind The Scottish Report captured the experiences of more than 1,250 people living with immune mediated inflammatory conditions. These are conditions where the immune system does not work as it should. Instead of keeping germs, infections and other foreign substances out of the body and destroying any that get in, the immune system causes inflammation that damages healthy parts of the body, which can lead to disability. These conditions include rheumatoid arthritis, inflammatory bowel disease, lupus, psoriatic arthritis, psoriasis, axial spondyloarthritis and others. They can affect different areas, such as joints, skin, the gut or the spine, but they are connected by inflammation and can make everyday life much harder and more painful.

More than half of people surveyed needed three or more GP appointments before being referred to specialist care. Early diagnosis is key to preventing long term damage and disability.  We need to work together to reduce the gap between people recognising that they are experiencing symptoms and them getting the early diagnosis, care and support they need.

Behind every statistic is a person trying to keep going

When diagnosis is delayed, the consequences are significant. People live with pain, fatigue, uncertainty and fear. Some struggle to work, care for family or do the ordinary things that give life meaning. In inflammatory autoimmune conditions, early diagnosis and treatment can prevent irreversible damage, reduce disability and protect independence. Delay is not simply inconvenient; it can change the course of someone’s life.

This matters particularly in Scotland’s rural and island communities, where people may have longer journeys, less access to specialist teams and have fewer follow-up appointments.

The moment for action is now

The newly elected Scottish Government has a key opportunity to make a change..  Whilst The Scottish Report highlights an issue for those living with inflammatory autoimmune conditions, we know that these issues span much broader health areas than just our community. A more joined-up approach, especially where people are living with more than one condition, could improve access to support and make services easier to navigate.

For people with inflammatory conditions, that change must include faster recognition of symptoms in primary care, earlier referral to specialist teams, better access to multidisciplinary support, and routine signposting to trusted patient organisations at diagnosis. Almost half of respondents to our survey said they were not referred to any patient organisation when diagnosed. This is a missed opportunity but something that can be fixed.

Patient organisations are not an optional extra

People with inflammatory conditions spend only a small proportion of their lives seeing various healthcare professionals. The rest of the time at home, in their workplace and in their social lives, they are making decisions about symptoms, medication, employment, family life and flare-ups. Patient organisations provide helplines, evidence-based education, and supported self-management resources as well as emotional support that help people feel less alone, more knowledgeable and more confident about what steps to take to manage their disease better.

There is no criticism in the report of NHS health professionals who are working incredibly hard under sustained pressure. It is about recognising that a sustainable NHS needs better, collaborative partnerships with the needs of the patient front and centre. Charities, Health Boards, health professionals, government and people with lived experience all have a role to play in re-designing a system that supports people earlier, closer to home and throughout their condition journey.

We want people living in Scotland with inflammatory autoimmune conditions to have the same chance of timely diagnosis, specialist care and trusted support wherever they live. The findings of The Scottish Report should be a turning point: not another document on a shelf, but a prompt for action.

Scotland has the opportunity to show what person-centred care for long term inflammatory autoimmune conditions can look like. That means listening to patients, acting on evidence, investing in earlier intervention and referring and signposting to trusted sources of patient education and support as a routine part of care. People should not have to fight their way through the system while also fighting their condition.

The question now is whether Scotland will seize this moment. Almost half of all people in Scotland live with more than one long term condition. They need to know that things will change for the better

You can read The Scottish Report here.

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