Head of Training Development and Quality
Arthritis affects approximately nine million people in the UK. It does not solely affect older people – 12,000 children have juvenile idiopathic arthritis – and 206 million working days were lost in the UK due to arthritis and related conditions in 1999–2000 (according to the Office for National Statistics).
A person’s initial experience of arthritis can be a difficult one. Many encounter a frustrating round of tests and investigations. After weeks of waiting, this may result in a diagnosis of arthritis, perhaps being prescribed some medication and given vague advice to go and learn how to live with it.
Most people have heard of arthritis, but few know much about it. Some perhaps may have mental images of it as an older person’s disease, involving painful movement or use of a wheelchair. It is not surprising therefore that being told you have arthritis is something of a shock. You may be overwhelmed by a whole turmoil of negative emotions.
The impact on individuals can be enormous, affecting family, friends and colleagues, the individual’s social life, and their career or employment prospects. They will find themselves in a health service that is still largely geared towards dealing with acute conditions that can be cured, and in a society that still tends to look at people with long-term medical conditions as problems that need to be fixed. The role imposed upon many is that of the patient – a passive recipient of care, awaiting the day that they can be cured and resume active participation in society.
A more positive role
People with arthritis need information – information about arthritis, about treatment options and, increasingly today, about what treatments are available in their local area. We need information about ways of coping, how to get help and how to develop our own skills to manage our arthritis. Healthcare professionals also need to understand all the issues that contribute to feelings of anxiety, anger, fear and frustration. What are my long-term prospects? Will I still be able to work? Will I need special equipment? What about benefits?
People with arthritis need to feel in control, by mobilising their own resources to promote their own wellbeing. There is nothing more disempowering than the passive model of patient care where patients “receive” treatment. Communication is the essence of a partnership dynamic with healthcare professionals that fully engage and involve the patient in treatment decisions in a constructive way. The goal is not to substitute appropriate medical care, but rather to enhance the management of a lifelong condition through shared responsibility.
The drugs option
At first sight, there is a bewildering array of drugs used to treat arthritis. Some people can feel they are on a merry-go-round, trying one drug after another, sometimes with unpleasant effects and little benefit. It is a worrying business. What are these drugs? How will they help? Could they make things worse? Will there be side-effects? What if I forget to take a dose? Can I afford them? How long can I take these without increasing risks?
Once again, communication and involvement are crucial. Healthcare professionals need to understand the patient’s beliefs and expectations of treatment. Sometimes patients may not have the most recent or accurate information about a particular treatment. Healthcare professionals need to understand concerns about how a treatment may inhibit or promote the patient’s daily activities. Such concerns could centre around how they can continue leisure activities, their ability to continue to function in a demanding career, or even the impact on intimate relationships.
The Medicines Partnership Programme is an important two-year initiative addressing these concerns. Supported by the UK Department of Health, it promotes concordance – an agreement reached after negotiation between people with arthritis and a healthcare professional. This respects the wishes and beliefs of the patient in determining whether, when and how medication is taken.
For many, drug treatment is a precursor to surgery, the thought of which can cause great anxiety. People with arthritis need to know and understand what is involved in order to make informed decisions.
What part can diet and exercise play in managing arthritis? What about complementary and alternative therapies? What about hydrotherapy? What equipment is available to enable the patient to stay in their home or continue working, and how do they access this equipment?
These questions are an indication of the challenges that people with arthritis must face every day in order to stay in charge of their lives and avoid isolation on the fringes of society. Healthcare professionals need to work as a team that supports these patients towards regaining or retaining their independence. People with arthritis need to be signposted on to the services of physiotherapists, occupational therapists and hospital consultants.
A wider network of information and support
Support is available beyond the boundaries of healthcare professionals. For example, in the UK, Disability Service Teams in Jobcentres can provide a range of solutions to help people stay in work or to obtain employment. The Benefits Enquiry Line or local citizens’ advice bureaux can offer guidance through a complicated and sometimes daunting benefits system.
It is important to realise that the voluntary sector also has a vital role to play. Arc (the Arthritis Research Campaign) funds medical research and produces informative literature on arthritis. Arthritis Care is the largest UK-wide voluntary organisation working with and for all people with arthritis. It has over 500 branches and groups and over 66,000 supporters. Arthritis Care provides helpline services by telephone and letter, including a service aimed specifically at young people. It offers a range of self-management and personal development courses for all ages to enable people to be in control of their arthritis, and it runs four hotels in the UK. It produces a range of helpful publications, including a bimonthly magazine, Arthritis News, and it campaigns for greater awareness of the needs of all people with arthritis. Equivalent patient support organisations exist in many other European countries, and links to their websites are listed on the People with Arthritis/Rheumatism in Europe Manifesto for the Third Millennium website (see Resources).
The potential advantages of linking people with arthritis into all these resources are immense. People with well-managed chronic conditions are more likely to exercise greater responsibility in taking their medication. With their improved knowledge, they are likely to have more confidence in approaching their healthcare professionals, increasing the likelihood of accurate prescribing. In this situation, medication is less likely to cause adverse side-effects and more likely to be effective, increasing consumer confidence.
Taking a wider perspective, if we are better able to cope with the fluctuating demands placed on us by our arthritis, we can exercise our right to be fully involved in society and the shaping of our health service and treatment. This would be a real opportunity for our whole society to be truly inclusive.
People with Arthritis/Rheumatism in Europe
Manifesto for the Third Millennium
European League Against Rheumatism
Arthritis Research Campaign