British Thoracic Society BTS

We are then asked, can we recommend someone else? Regrettably we cannot do this, nor can we comment on the standards of care given by individual doctors. However, we can offer the following advice, which we hope, will help you to work together with your GP or specialist to solve your problem.

Most problems between patients and their doctors are not about bad advice or treatment but about bad communication. This is becoming an increasingly difficult problem for doctors, (both GP's and specialists) because they are being asked to see more and more patients. There is therefore less and less time that they can give to you as an individual when you go for help. A further problem is that patients have been encouraged by recent governments and the media to expect more from modern medicine. Sometimes these expectations are not realistic. Patients are more aware of new treatments through newspaper and magazine articles and television and radio programmes. However, the journalists who produce this information are only interested in what is new. They will often try to "hype up" a new treatment to encourage people to read their articles or listen to their programmes. The doctors whose research they are reporting are usually much more cautious about what it can achieve.

A further new problem for doctors and patients is information about treatments that patients or their relatives can get from the Internet. Please be aware that anyone can write anything they like about any disease or treatment they like on the Internet. There is no authority available to check that this information is correct. They do not have to be medically qualified. They do not have to have done any research. They do not have to have had their work published in a peer-reviewed journal. (This means a scientific journal in which other scientists have checked that the research has been done properly).

Information provided by organisations such as the British Thoracic Society or NICE (National Institute for Health and Clinical Excellence) in the UK or the American Thoracic Society or American College of Chest Physicians in the USA can be relied on as it has been provided by doctors and scientists belonging to organisations respected and approved by their national governments. However, it can be very difficult sometimes to know how reliable a source of information is. If you find a treatment on the Internet that your doctor hasn't heard of, therefore, it may just mean that it hasn't been reported in any respectable medical journals and isn't worth knowing about or it may be a treatment that is still at the research stage only. Nonetheless your specialist or GP will be happy to discuss this with you but may of course need some time to research it outside of the normal surgery.

While treatment for chest diseases today is better than it was say 10 years ago, and treatment in say another 10 years time will be better than it is now, it is very important to understand that not all chest diseases can be cured. Even when this is the case, however, patients can still be helped to come to terms with their diagnosis and to have therapies to ease their symptoms. To get the best from your GP therefore it is vital to fully understand the diagnosis and what treatment can be offered. Because your GP or specialist really needs much more time to explain this to you than is available, efficient communication between you and your doctor is therefore very important. Here is some advice about communication, which we hope will help: -

If you are unhappy with advice/ treatment from your GP:

1. Make an appointment to see the GP. Tell the receptionist that you are unhappy and want some time to talk things through. This may mean longer before the GP can give you an appointment but it is important that they book you a longer appointment so there is more time to talk.
2. Before you see the GP, write down a list of the questions you want to ask or the things that you feel are not right or the concerns or fears that you have. Take this with you when you go to see the GP and go through it with him/her. This will help the GP to understand your problems. It will also help you to make sure that all the areas that you don't understand or are not happy about are properly covered. (If you want, take a friend or relative with you. This can help you remember the questions you want to ask and to understand and remember the answers that in some cases may be quite complicated. In particular, if English is not your first language, it is a very good idea to ask a friend or relative to go with you to help as an interpreter.)
3. If you are still not satisfied ask if you can see one of the other partners in the practice. Going through your problems with a different doctor may help to put a different perspective on them.
4. Also consider asking to have a talk with the practice nurse. Particularly with more chronic chest diseases, Nurses can help with advice on adapting to and managing chronic respiratory conditions such as asthma, COPD or other causes of breathlessness so that you can improve your quality of life. Some patients find they can communicate better with nurses than with doctors and find it easier to have things explained to them by the nurse than the doctor. Most practices have more than one nurse and often one of them specialises in respiratory problems, so ask if there is a Respiratory Nurse attached to the practice.
5. Finally if you are still unhappy you can write and make an official complaint. This should initially be to the practice manager.

If you are unhappy with advice or treatment from a specialist consultant or member of their team

1. Telephone the consultant's secretary and ask for an appointment to speak to him or her. Please do not expect this to happen quickly. There is on average only one Respiratory specialist for about every 100,000 of the UK population and in some parts of the country there are even fewer. The extra time that the consultant spends to go over your problem means that other work will have to be put aside. The consultant’s secretary may want to know what you want to discuss. Do not worry about this. Anything you tell her/him is strictly confidential. If the consultant knows what you are concerned about before the consultation this can help them to make sure they have all the necessary information (for example results of outstanding tests) before they see you. Sometimes it may be helpful, at least to start off with, for the consultant to speak to you over the telephone after receiving your message from their secretary.
2. As with talking to the GP, writing down your problems and going through them with the consultant should be helpful.
3. If you are still not satisfied, go back to your GP and explain what you think is wrong. Your GP should then be willing to talk directly with the consultant on your behalf.
4. If you are unhappy with the treatment /advice you are receiving from a member of the consultants junior staff ask for a consultation with the consultant similarly if you are dissatisfied with consultant ask if you can have a second opinion from one of their colleagues or be referred elsewhere either by your consultant or by your GP.
5. If you are still dissatisfied you can write to the Chief Executive of the trust or discuss your problem with the Patient Liaison Service PALS.

If you believe the GP should be sending you to a specialist but he/she is not willing to do so

Most doctors are always willing for patients to have a second opinion. In difficult cases this can be most helpful to both patient and doctor; even if the specialist opinion is that nothing more can be added to the treatment that the GP has already given. However, your GP has to be persuaded that a consultation with a specialist is going to help. If GPs ask specialists to see patients that they can safely treat themselves this means that other patients, who really need to see the specialist because they have a complicated problem will have to wait longer for an appointment.

If you still believe that you need to see a specialist, ask for an appointment with the GP and explain exactly why you are not satisfied with the diagnosis or treatment that you have been given. If the GP still believes this is not necessary, ask if you can at least have a second opinion from one of the GP's partners.

If you have already seen a specialist and are unhappy with their advice, it may be possible to have a further opinion from another specialist. Unfortunately some patients may keep on asking for further opinions because they have difficulty facing up to a diagnosis with a poor prognosis or where little treatment can be offered. They keep hoping that if they see just one more doctor they will be told what they want to hear. Talking these fears over with the GP is much more likely to help patients in this situation than seeing many different specialists.