A Special Child in the Family

The Professionals

 

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Doctors

When I talk to other parents about their contact with the various professionals, it's nearly always doctors who are mentioned first. That's hardly surprising for they give us the initial diagnosis, check our children's progress and link us with many of the other professions. For some of us, our dependence on doctors is enormous because our children depend on constant medical care for their quality and length of life.

Although the idea of doctors being second only to God in importance has gone, many parents feel less at ease with them than with any of the other professionals they meet. I know I was more apprehensive about asking them to help with this book than I was of contacting anyone else. I need not have worried for, when I eventually plucked up my courage, they were very encouraging and helpful.

We expect high standards from doctors, higher perhaps than we would set for anyone else. We want them to always be available but never to make mistakes, even at two in the morning after a full day's work! We want them to really care about our child but never to let that caring cloud their medical judgement. We want them to allow us to stay with our children during treatment but not to let our nervous jitters make it harder for them to put a needle in a vein.

The ideal doctor, from a parent's viewpoint, shows that she cares about the whole family as well as having all the necessary medical skills. Not everyone finds this easy to do. Some offhand or distant behaviour by doctors is not callousness but shyness or a coping mechanism to enable them to work constantly with severely ill or disabled children without cracking under the strain.

Family doctors

A good, understanding GP can make life much easier for you. As well as providing good care for your child, she will understand the stress you are under and be sympathetic if you develop health problems yourself as a result.

Your GP can link you with much of the help available for your child so she is a good person to talk to if you feel you are not receiving as much support as you need. For instance, she can refer you to a social worker, occupational therapist, speech therapist, dietician, physiotherapist or district nurse as well as to specialist doctors.

Many parents go through agonies worrying when to phone the doctor. The golden rule is "If in doubt, ask". Find out from your GP and consultant if there are any special problems you should watch for, or any conditions which need treating faster in your child than in a normal one. Ask them when to go to your GP and when to go directly to the hospital.

If your child develops symptoms that worry you, take him to the doctor or phone for advice. Don't worry about wasting your doctor's time. It's quite reasonable for you to need help to learn what matters and what doesn't.

Your GP is only human so she prefers her spare time to remain uninterrupted and to have an unbroken night's sleep. Don't phone out of hours about something which could reasonably wait until tomorrow. If your child is off colour and likely to deteriorate to the point of needing a doctor by the evening, contact your doctor before she goes home rather than hanging on until she is in the middle of her tea. Similarly it'is preferable to phone early in the evening than delay and end up dragging her out of bed in the small hours.

Don't allow the previous paragraph to stop you calling a doctor out of hours if you really need one. No good doctor minds being called out if there is a genuine need. Neither will she mind you phoning for advice if you are genuinely worried and don't know whether you need her or not.

Often the GP you contact will not be your own, perhaps because your doctor shares "on call" with colleagues or because you are away on holiday. It's important to make sure the new doctor has all the relevant information: child's age, disability (if relevant), any current treatment (especially names of drugs) as well as the current symptoms. Make sure she knows if your child is particularly at risk, perhaps because he is very chesty, has a weak heart or is liable to fits with a high temperature.

A strange GP is likely to know less than you about your child's condition, especially if it's rare. Although she may resent you telling her what to do, comments like "My doctor usually gives him Septrin" may be welcome. If she is really in doubt, you could suggest she phones the hospital for advice. Some parents find it helps to plan ahead for this problem occurring on holiday by taking a letter from their doctor or hospital recommending any medical treatment that may be necessary.

Hospital doctors

So far I have only talked about consultants when referring to hospital doctors. They are the most senior doctors in a hospital and the ones you are most likely to see at outpatients clinics. They make decisions on treatment without reference to anyone else and leave the routine work like chasing x-rays to the more junior members of staff. They are also involved in hospital organisation and management.

The next level down are the senior registrar (SR) and registrar, although the SR may be missing from smaller hospitals. They are both experienced doctors who make decisions themselves and order treatments, although they work under the guidance of a consultant. Even if your child is officially under a consultant, you may see a registrar or senior registrar most of the time, especially if she has a particular interest in your child's condition.

The most junior level in paediatrics is the senior house officer (SHO). As she is young and probably the first doctor you meet on admission, she may seem the most approachable. However, she will only have qualified a year or two ago so may not be the best person to answer complicated questions about your child's condition or treatment.

Communications

When your GP first asks a consultant to see your child, she will write a referral letter outlining the problem. After your first hospital visit, the consultant will write to your GP saying what she has found and what action is necessary. This letter may not arrive for a couple of weeks because of delays in typing so don't assume your GP will immediately know what the hospital have said. If urgent communication is necessary, the consultant may phone your GP or send a handwritten message with you.

Ideally, she will also write to your GP after each subsequent visit but this is not always possible in very busy clinics. Then the consultant will only write if there is anything significant to report such as a change in condition or treatment.

If your child needs surgery or treatment in hospital, the consultant will arrange this. If continuing medical treatment at home is needed, she will advise your GP what to do. Note the word "advise". Technically GPs are in charge of their patients' care; consultants can only suggest treatments, not order them.

Some GPs welcome the consultant's advice, working as a team with the hospital in caring for your child or even leaving the hospital totally in control. Others only accept the advice grudgingly while some really resent it, taking the attitude "He's my patient and I'll do what I think".

Occasionally a GP refuses to prescribe a drug recommended by the hospital. If this happens to you, ask your GP to explain her reasons and reconsider her decision. If that gets you nowhere, contact the consultant and ask her to help by talking to your GP. If neither of these approaches work, the only solution is to change your doctor.

Your GP is unlikely to keep the hospital informed about treatments she gives so you will have to update your consultant at out-patients clinics. If your memory is anywhere near as bad as mine, it is worth noting down which antibiotics and other drugs your child is prescribed and what they were for. Otherwise the simple question "How's he been keeping" can throw you into confusion.

Communication problems can also occur if your child is being treated by more then one consultant. In theory, your GP coordinates the various treatments. If she doesn't (which is quite likely), it is usually the paediatrician at the hospital who is the best one to be in control. She is more accustomed to considering the whole child than a doctor specialising in one particular field of medicine and is also more likely to be a good communicator. If you are confused by a battery of consultants and no one seems to be coordinating their work, ask the most sympathetic one for help.

Specialists

There is an increasing tendency for consultants and hospitals to develop special interests with the result that some units have particular expertise in particular fields of childhood illness. If such a unit exists for your child's condition, it's usually worth taking your child there even if it is some distance away. The staff there should be able to give the best possible treatment as they will have more experience of his condition and the most up to date information available on current research. Not only will the doctors be more aware of your child's needs, but the other staff like physiotherapists and nurses will be too. The rarer your child's condition, the more this advice applies.

Unless you are fortunate enough to have a specialist unit locally, you will end up with your child being treated by a GP, a local hospital and the specialist hospital. This can cause communication problems, especially if your local consultant resents the advice from the specialist because she is unwilling to admit another consultant knows more than her. This professional pride may also account for the difficulty some parents have experienced in persuading their local consultant to refer them to a specialist. If you meet this problem, ask your GP to refer you instead.

If you have a good GP and your specialist hospital is reasonably easy to reach, you may decide to omit visits to the local hospital as it has little to offer on a routine basis. However, if you live a great distance from the specialist, a system of shared care between the two hospitals may be more appropriate. For example, some children with cystic fibrosis attend a regional CF clinic for an annual check but receive the rest of their care from their local hospitals.

Changing doctors

There are two main reasons why you might consider changing doctors. Firstly, you may have lost confidence in your existing one. Maybe she failed to diagnose your child's condition for months or she refuses to follow the hospital's advice. Whatever the reason, you no longer have faith in her abilities. Secondly, even when you like your existing doctor, you may know of someone else who would be better because she has more interest in and experience with children like yours.

Perhaps you are hesitant to change doctors for fear of hurting people's feelings. I know we were before we did it. All the doctors I have spoken to were adamant that you should not compromise in trying to get the best care possible for your child just because you are worried about upsetting people. As a consultant paediatrician put it, "You owe no loyalty to your GP or your consultant. Your loyalty is owed to your child."

No one can please all the people all the time so every doctor will find some patients lose confidence in her and wish to change. Although all doctors lose some patients, most also gain some from other doctors.

Your doctor will probably feel upset if you change but her upset will be directed more at her failure with you than at your actions. Of course, if you have really become at loggerheads with her, she may be as pleased to see you leave as you are to go.

Don't commit yourself to leaving until you are sure there is somewhere better to go. Asking other parents can give you a good indication of the most sympathetic local doctors. If you want to change consultants but are too shy to tell your existing one, ask your GP to refer you to someone else. He may suggest an alternative if you cannot.

If you are planning to change GP, make an appointment to visit the one you would prefer. That gives you a chance to check you like her and to find out if she is willing to have your family on her list. If your chosen doctor is in the same group practice as your existing one, she may not feel it is diplomatic for you to change officially. However, she may be willing to see your child all the time anyway.