Stene Prize Submission 1998

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How do you expect modern information technology to be of any use to rheumatic patients in the future?

I am writing this essay from the perspective of having been an arthritis sufferer (Sharon abhors this terminology now) myself for 17 years. I am now 36 years old and a mother of a four year old daughter. I am conscious that I have to live the rest of my life with this disease and there will be ups and downs along the way. I want to write this essay for my future in the hope that modern technology will help me and my family to have a richer and more fulfilling life.

doing the little deaths

Many years ago a very special man changed the course of history with the famous words "I have a dream". Well, I too have a dream. When I can stand outside of myself and look as objectively as possible at the person I know as me, I can see how arthritis has slowly changed my life and I can see the things I have lost. My main problems in the early days were pain, loss of movement in my limbs, restricted mobility, anger and denial, depression and feelings of isolation and fatigue. All of these symptoms lead to a restricted lifestyle, having to give up things I had always enjoyed, doing the little deaths I call them.

a more informed package of care

Now I feel it's time to claim as many of those things back as possible and I think Information Technology can help. Pain seems to me to be the greatest and most overwhelming symptom and the one I wish to deal with first. Modern technology can help with this in many ways. Firstly and simply, access through the Internet and CD ROM's to drug companies and medical sources would help to find out about the different sorts of pain killers that are available on the market along with their availability. More importantly it would provide information about their side effects as well as the latest research that is being carried out into painkillers and anti-inflamatories and second line treatments. Having this information gives each individual more choices in how they choose to lead their lives. Some may choose to use less effective painkillers but consequently be more awake to do activities in life that are important to them. They may choose not to have a second line treatment in favour of continuing to enjoy fine wines with their meals, or they may wish to try a different second line treatment for the same reason. Being armed with the information means they can negotiate their care with their consultant and together reach a more informed package of care and each consequently becomes more empowered. The consultant is more likely to have a patient that will comply with the prescription of care and the patient because they feel they have been heard and understood and are consequently more informed and in charge of their own lives again.

take back control of our lives

Secondly, access to medical data through the internet about pain and what it actually is in medical terms can help us as individuals to understand our bodies. Being able to ask questions of people by e-mail takes away the anxiety of wasting someone's time and also allows us time to think the questions out carefully and takes the pressure of needing to get all the questions out at once. I think that e-mail or internet help lines attached to the various arthritis charities would be a great step as they often have the most up to date information available. Having questions answered in this way and from the comfort of your own home will encourage more sufferers to seek the advice and information they need and consequently they will be better able to cope with their disease. Internet access can also help us look at complementary approaches to pain relief and relief of other symptoms; such things as Homoeopathy, acupuncture and herbalism. Once again armed with this information we can then discuss and negotiate with our consultants. More knowledge about the disease is always a good thing as it give us the opportunity to take back control of our lives and make active and effective individual choices.

Thirdly, speaking to others who are in a similar position to one's self always helps. E-mailing or internetting fellow sufferers can be very supportive. Swapping ideas and experiences is beneficial for both parties as both receiving and giving information boost confidence and feelings of self-worth, two qualities which can become lost in the general experience of this disease. On a simple and practical note, I would like to see my futuristic smart home computer speak up and remind me it's time to take my pills, thus ensuring maximum pain relief so that I can get on with my life. Who knows, one day my computer will be able to pick up the symptoms of my pain returning and be programmed to administer a regulated dose automatically.

on-line physiotherapy sessions

As a result of the pain and inflammation in my joints, general movement and mobility become restricted. Again, access to the internet in the early days of diagnosis would be useful in order to learn about how to look after my joints effectively early on rather than waiting until they get bad enough to warrant a referral to the physiotherapist. In the future, it would be nice to e-mail our physio's and OT's as problems arise thus avoiding further deterioration whilst waiting for appointments. Better still, I would like to see computer link conferencing physio sessions where groups of patients who are housebound could all be on-line together doing their exercises under the supervision of their physio's. This would help in improving or maintaining mobility and providing a boost to one's morale on a regular basis by interacting with other sufferers and our professional carers at the same time. The OT's could provide advice about adaptations needed to improve each individual's quality of life quickly thus solving problems before they become too entrenched. Hopefully, it would also prevent sufferers having to give up things they enjoy doing because they cannot see a solution to their problem. Maintaining the quality of life is so important and being able to contact help quickly through the internet or e-mail would make such a difference.

virtual mobility

Loss of mobility is an enormous problem to arthritis sufferers and makes leading a normal life virtually impossible. I would like to see modern Information Technologies create "virtual mobility" for all. Surfing the Net is already a reality and I would love to see this expand. I want virtual shopping malls, virtual libraries, universities and theatres. It would be very nice not to give up on the everyday things like shopping around the supermarket and going to the bank. It would be nice to do it all from the comfort of my own home and save my energy for my hobbies and going out with my family. Being able to access library books and if necessary have them as talking books through my computer would be such a boon and would take away the dependence that we all have on others to do things or get things for us. There is nothing more frustrating than not being able to choose or browse through the books or for that matter the shops by yourself at your own pace without feeling exhausted at the end of it all. Even such simple things as choosing your spouse or child a surprise present become impossible. So a virtual shopping mall or my local town centre on the internet would be wonderful. It would restore a level of independence that we all take for granted until we haven't got it and thus restore a sense of self worth and increase the quality of life.

world-wide conference support groups

As a result of the pain, the loss of mobility and often the drug regime as well, one of the other main symptoms of arthritis is fatigue. Fatigue leads on to depression. This is often one of the most difficult things to deal with and I personally believe that drugs are not always the answer. Like many arthritis sufferers I have spoken to I feel that I only get depressed by my pain and immobility etc., so if I could deal with these I would not be depressed anyway. So my solution is to use modern technologies to set up lots of support groups, buddies to talk to and access to our health professionals via video links to deal with any new problems as they arise thus avoiding a build up of problems which consequently lead to the depression and fatigue. I think world-wide conference support groups could add a whole new dimension to life, speaking to fellow sufferers and sharing problems and solutions would be a wonderful step. E-mailing a buddy, a trained support person to talk to when times are hard would help you through to a new day. Knowing that you are not alone and that other people are out there who have been in your shoes and have come through the other side is a great comfort when life and the world closes in around you.

Out-patients' appointments could become much easier on the Internet linked through G.P. surgeries. This would save time and money and all health carers who are directly involved in your care will be better informed of your present condition and how to manage it and it would make liaison between the two professionals more effective whilst ensuring that the patient is confident that the left hand knows what the right hand is doing. The internet and video conferencing would also mean that if you were not well enough to physically attend an appointment you could still be seen by your consultant from your home and he would be more able to assess whether an admission to hospital was an appropriate course of action.

Most of what I have talked about is technology that is available now and it's just a matter of time until we all will have access to it.

smart information technology

However my real dream for the future is smart information technology. I would like programmes to ask us questions about our disease and our symptoms and provide us with the information from the Internet that it thinks answers our questions or problems. They would sift through the vast quantity of information that is available and sort it for us in such a way that the information we receive is useful and focused on our particular area of interest. In this way, we would avoid hours of searching and hopefully start using the information more quickly. Being able to describe a particular practical problem, i.e., difficulty getting in and out of the bath, a smart computer will inform appropriate professionals and companies about the nature of the problem and they will then be able to send the information directly to us on possible ways of solving that problem.

Lastly and most excitingly, I would like to talk about the smart house, buildings and cars of the future. I envisage each individual would carry a microchip with them which would contain all the information about their physical needs. As they approach a building the computer from that building would read all the information on their microchip and provide a safe passage for them into and through that building, be they walking with a stick or wheelchair bound. It would open doors, alert the necessary people to their presence, provide information for them to know how to reach their destination and ensure they reach their destination safely. It would inform their car's computer of their leaving the building and arrange for the car to be outside and waiting when they arrive. The house would be customised to each individual's needs, thus relieving them from the irritating difficulties of daily life such as opening doors, turning on lights and televisions etc., leaving them free to fill their lives with challenging and fulfilling activities of life.

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