Dr Phil Hammond

Probably the most common question asked by a patient to their GP is "What have I got doctor?" and increasingly evidence comes along that a delay in diagnosis and treatment can have profound effects on outcome. In the case of a patient with a rare condition a quick diagnosis can be extremely difficult to make during the short period of time available for a consultation.

Due to the thousands of conditions, it is quite impossible for a family doctor to keep up to date with every single one, as the human mind cannot retain that much information. It is therefore entirely reasonable to suggest a diagnosis or to take information with you relating to your symptoms. Doctors may have seen patients with pituitary disease during their training in hospitals, but many will never make a diagnosis of probable, or possible, pituitary disease as a GP.

Nowadays more and more people are using the Internet as source of information. When finding information on the Internet, start with a site that you trust. For example, the information on the Department of Health website is fairly well written and the site provides links to other trusted sites. The Royal Society of Medicine also produces a patient booklet on Internet sites.

In an ideal situation doctors and patients would work in partnership, with both parties valuing each other's statements, not being judgmental and not feeling threatened. However, this is the ideal and there is still a long way to go. Many doctors find it difficult when patients, without being assertive or aggressive, gently question that there might be a different diagnosis. But this has to be the way forward and patients have a very important role in achieving this. It is entirely legitimate for patients to ask these questions and make these sorts of suggestions. There are some areas in which patients have expertise not just in the experience of the illness, but also in the knowledge of the illness. GPs and doctors should not feel threatened by this. If both patient and doctor feel at ease with this relationship then there are very important things like empathy, support and understanding that can follow. Those with specialist conditions are leading the field in redefining the doctor patient relationship and making it a more equal partnership.

For a long time, there has been a huge gap between the amount of information provided by GPs and specialists and the amount of information wanted by patients. Even when leaflets and information have been provided in hospitals and GP surgeries they have not necessarily been of the highest quality. An in-depth survey performed on all the information offered to patients, including patient leaflets and videos, across a huge range of conditions found that in the vast majority of cases the information contained glaring inaccuracies, was not up to date and there was a gross oversimplification of complex issues. Straightforward, honest treatment choices were not offered and the information tended to be biased towards the positives, without looking at the possible downsides of treatment options.

There is also an issue about truth telling in the NHS. Going back to the 16th and 17th century there was a French physician who said that he thought truth telling to patients was an interesting idea, but that it would never catch on because it would seriously undermine medical practice! This idea continued pretty much unabated for another 300 years. Only recently, probably as recently as the 1990s, have the medical profession decided that patients deserve to know the truth across a whole range of illnesses.

After diagnosis comes other questions including "What are the treatment options?" and perhaps more importantly "Will it work?" More recently the latter has changed from just "Will it work doctor?" to more difficult challenging questions including "Are you any good at it?" "How many of these have you done?" "What sort of results do you get?" and "How do your results compare with the national average?"

Getting this sort of information can be difficult. Out of exposure and litigation, Bristol and Alder Hey Hospitals have been forced to publish their results for heart surgery, but for nothing else. In an ideal world, information about competence and quality of service would be freely available, on the Internet, from the hospital or given to your GP even before you needed to go to hospital. Until this happens, patients have to do this on an individual basis.

The key to education and the key to learning how to be educated is to learn to ask good questions. A lot of patients are too frightened to ask their doctor questions and as a result do not obtain the information that they desire. This does not mean that you have to ask all those questions. Individuals differ enormously in the amount of information they want and the amount of information they can take in. If you find it better and more constructive to have fairly blind trust in your doctor and to hand over that trust to your doctor that is fine. If you want to be an assertive patient who researches things that is fine as well. It is legitimising the fact that we all have a right to information that is suitable to our level.

To summarise:

• Do not be afraid to suggest a diagnosis to your GP or take information with you relating to your symptoms.
• If you want more information about your condition e.g. treatment options, long-term prognosis then ask for it.
• To ensure that you are getting the best possible treatment, ask questions about the competence of those treating you.