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Introduction
It is devastating to discover your child has arthritis, and it gets worse when you discover how much 'treatment' you will be asked to do at home. It can be difficult for professionals to really understand what this feels like, especially when they work with kids with arthritis all the time, and have seen the most ill and most affected children. For you, it's your child, and your first encounter with childhood arthritis.
Parents experience a whole range of feelings including anger, helplessness, depression and frustration. These feelings are entirely normal, and very common, but we tend not to tell each other! Parents should not be left feeling helpless, powerless and overwhelmed. The truth is that the parents are the key to how the child meets the twin challenges of arthritis and treatment. There are ways of equipping yourself to meet these challenges. This book is one way and there are more important resources in your wider family, friends, and local community. Some people may let you down but others will become your heroes.
Therapists work in different services and once you get to someone they should be able to assess the whole situation. The GP can refer you to all these professionals, or you can contact the different department and refer your child yourself.
Consultant
These very experienced doctors have specialist qualifications in different kinds of medicine. They usually lead a team of different professionals who should work together to deliver particular clinical services.
Clinical Nurse Specialists
These are nurses who have additional training about arthritis. They work closely consultants and can play an important role in helping to co-ordinate medical care.
They advise parents and children about medication and injections, and support families caring for a child with arthritis. They tend only to work in larger hospitals, and are often involved in research.
Dieticians
Dieticians can give important help in caring for people who have digestive problems caused either by psychological or physical conditions. They can give advise if there has been serious weight loss or gain, or where medical treatment has interfered seriously with normal diets (such as radiotherapy). They are usually hospital based.
General Practitioners (GPs/family doctors)
These are doctors who have specialist in community health and may have other areas of special expertise. The GPs are usually the first person to assess a child who is very unwell, and they may start different kinds of tests (e.g. blood tests) to try to find out what illness the child has. Most GPs do not often come across children with arthritis, and are likely to refer the child to a specialist to confirm the diagnosis and begin a programme of specialist treatment.
If you want to find or change your doctor, contact the local health Authority or look at the 'local doctor book' at the local library and Citizens Advice Bureau. Check that the new doctor has space for new patients and can accept new patients from your area. Fill in a transfer form available from the new doctor's surgery. You do not have to ask permission from your existing doctor, but before you make the change, carefully check out services available from different surgeries (such as blood tests, pharmacy, health visitors, women doctors).
Occupational Therapists
Occupational Therapists (O.T.s) work with carers and children to assess physical, psychological and learning difficulties and offer advice, equipment adaptations or training. The aim of Occupational Therapy is to help the young person achieve the highest possible level of independence for daily living within their home, work or school environment. The assessment can take place in the Occupational Therapy department or school, but is usually most helpful if done at home, and includes the needs of other people who live there. They work for health services, social services and local authorities.
Orthopaedic Consultant
These doctors who have specialist qualifications about diseases, injuries and disorders affecting the development and function of joints and bones.
Paediatric Rheumatologist
This Consultant has special qualifications and experience dealing with all aspects of arthritis in children. There are only a relatively few of these specialists working in regional centres in the United Kingdom. Their expertise is especially helpful in the early stage of families learning how to manage childhood arthritis.
Pharmacists
Pharmacists are trained to understand and dispense medicines. Hospital pharmacists can usually only give you medicines for two weeks. Find a local pharmacist who you can easily ask questions. If you need a large quantity of medicines or equipment on a regular basis it is sometimes possible for them to collect your prescriptions from the GP for you, and to arrange to deliver these to your home.
Physiotherapists
Physiotherapists (P.T.s) work with the children and carers, and they assess movement and mobility. They then deliver appropriate treatments such as exercises, manipulation, and heat treatments. They may teach a series of daily exercises at home. They are often involved with advice about mobility. They can advise carers on how to lift safely and posture. They work for health services or in the private sector.
Podiatrists
Podiatrists are concerned with all matters relating to the care and health of feet and they can make specialist innersoles and wedges worn within shoes to order to correct or protect the foot. There can be long waiting lists to see them in the NHS.
Rheumatologist These specialist Consultants have specialised qualifications in arthritis-related conditions and treatment. Most Rheumatologists work with adults, but they may see some children with arthritis.
One parent's advice was "at first we could not understand why it took so long to make a diagnosis. We now understand that it is important to ask the questions we want answered and not just accept what the doctors say'.
Childhood arthritis is managed through a combination of medicines, daily exercises, and splinting. The main principles for the whole healthcare team and family are to:
Sometimes other modes of treatment are used as well, and a wide variety of healthcare professionals become involved. For everyone, there needs to be a balance between what seems important today and what is best for the child in the longer term. For example, it may seem kinder to let the child rest today, but we know that if the child rests too much her joints will slowly cease to work, causing considerably more pain and problems in the future.
The reality is that this is a long term, mostly painful condition requiring complex daily treatment, and there is no cure. Experienced specialists know that the majority of children outlive active arthritis, and that the quality of life the person achieves and degree of deformity they have to live with will depend upon:
There is little choice about the first item, and sometimes there seems little choice about the remaining four. However, a considerable amount can be achieved when the parents become informed about arthritis, treatment options, ways of supporting the children, how to conduct the exercise and splinting options at home, and how to reach services that could help the family. That is the task of this handbook.