Becoming an Expert Patient - article 3: Dealing with Doctors

Dealing with Doctors

Something many people with Fibromyalgia Syndrome (Fibro) find difficult is working out how to best deal with doctors. Establishing a good working relationship with your healthcare team is often a crucial part of getting control of your condition and keeping control of it.

Getting a good healthcare team that you can work with may involve:

1. Finding a doctor or doctors, and other healthcare professionals, that you can work with.

2. Understanding the doctor (or other healthcare professional) - patient relationship.

3. Learning how to talk to and deal with doctors and other healthcare professionals.

Finding a Healthcare Team

"Healthcare team" is a phrase not often used in the UK, but many people with Fibro need a multidisciplinary approach to best get control of the condition and this requires a healthcare team rather than just one doctor. Personal recommendation is extremely useful when finding a healthcare team for Fibro as so few people are really specialised in it. If you have a doctor or other healthcare professional who has a good understanding of, and actually treats, Fibro, then recommend them for the FibroAction Recommended Healthcare Professionals list.

Although your GP may refer you for various other treatments and forms of assistance, patients often need to push to get referrals and, with the funding limits of the NHS in the UK, many people with Fibro end up using some kind of private healthcare. As an expert patient, you will need to learn how to find a healthcare team yourself: you can't expect that the best healthcare team will always be found for you.

Tips for finding a healthcare team:

* Get personal recommendations. Local support groups may know of Fibro-friendly GPs and other healthcare professionals in your local area, as well as recommended specialists within reach. Or check out the FibroAction Recommended Healthcare Professionals list.

* Finding a GP you can work with is usually the first step and they do not need to have much specialist knowledge of Fibro, as long as they are willing to learn and to accept suggestion, such as from specialists or from reputable information sources.

* The NHS Choices website can help you find NHS GPs and hospitals in your area.

* The Yellow Pages will have local GP surgeries and complementary therapy clinics/centres and practitioners listed.

* Try to find healthcare professionals you have an interest in Fibro, even if they don't have specialised knowledge. Ask if any of the doctors or practitioners at a surgery or clinics/centres has an interest in Fibro. When you first meet, ask them about Fibro to judge their level of knowledge and attitude towards the condition.

* Check the qualifications of all complementary healthcare professionals, as well as how long they have been practising. The internet can be extremely useful in finding out what letters after someone's name mean and you may find the qualifications are not relevant to the service they provide.

* Ask for referrals, don't wait to offered them - or not offered them.

Remember that the NHS Choose and Book system now means that patients referred to see a specialist are able to choose where they are treated from any hospital that meets NHS standards, which includes many private hospitals as well as all NHS providers. So you can now choose, for example, to go to the NHS FM Clinic at Guy's Hospital in London instead of your local hospital.

* Find out what is available to you on the NHS or through social services. Physiotherapy, hydrotherapy, counselling and nutritionists may be available on the NHS: check with your GP. Occupational therapy and exercise programs may be available through your local social services, but again your GP should know of such schemes if you ask.

* Remember that going private is an option in many cases, whether this is private doctors, private physiotherapists, or complementary therapists.

Understanding the Doctor - Patient Relationship

You, the patient, are in charge of your healthcare. This is something that many patients in the UK often forget because of a culture of "doctor knows best". If you are unsure about a treatment, you have the right to ask for more details, to have an input into what treatments are chosen and how you take them, and also to veto treatments. If the doctor (or other healthcare professional) isn't prepared to listen to you and address any concerns, then you may not be able to have a good working relationship with them. You need to have this two-way relationship, otherwise you could end up risking your health in some way, by either stopping seeing a healthcare professional that could help, by not following their instructions (e.g. not taking medications they have prescribed, which can be dangerous as they will assume you are taking them) or by being stressed by following a healthcare regime of some kind that you are not comfortable with.

The optimum management of Fibro often requires a multidisciplinary approach that includes lifestyle adaptations and support or complementary therapies such as physiotherapy and counselling, as well as medications. It is extremely unlikely that you will be able to take one pill and have all your symptoms go away. Managing Fibro can be extremely difficult and many patients struggle to carry out their treatment and management plan. However, it is important that you remember that what you do can have a real impact on your health and how effective your healthcare team can be. If your healthcare team prescribes a treatment plan, whether it is medications, exercises, lifestyle adaptations, counselling or dietary changes, it is your responsibility to carry out the plan. If you expect your healthcare team to do their best to control your Fibro, then it is only fair that you acknowledge that you have some responsibility too.

Specialists are specialist. In the UK, we so often see our GPs instead of specialist doctors that it can be easy to forget that most doctors are not general doctors. If you see a specialist, then don't expect them to be able to work outside their speciality. This is especially important with Fibro because it can cover so many medical disciplines and need input from so many different therapists as well: remember that the perfect multi-disciplinary clinic for Fibro is unlikely to exist. Even if you see a doctor that has specialised in Fibro, they are unlikely to be specialists in gastroenterology, cardiology, gynaecology, counselling and physical therapies, but these specialities are some that may be needed for Fibro. On the other hand, because of a doctor's specialism, especially if they are specialised in Fibro which most doctors will have had no training in, what they suggest may be surprising to your GP. This can be disconcerting, but remember that you see a specialist for their specialist knowledge: if your GP knew all that, then you wouldn't need to see a specialist.

Doctors are not infallible and you shouldn't expect them to be so. It is important to remember, for a number of reasons, that doctors are only human and that they may err in a number of ways. Doctors, like the rest of us, can have bad days and make mistakes; they do not know everything and do not get on well with everyone - no-one does.

Doctors and other healthcare professionals need your input as no-one knows your body as well as you do. You are more likely than any doctor or healthcare professional to remember any allergies or intolerances, the details of past experiences with medications and treatments and your whole medical history. And only you can know how any treatment makes you feel.

Things to remember about the Doctor - Patient Relationship:

* You, the patient, are in charge of your healthcare.

* If you expect your healthcare team to do their best for you, then do your best for yourself as well.

* Specialists are specialised.

* Doctors are not infallible - don't expect them to be so.

* Healthcare professionals need your input as no-one knows you like you do.

Talking to & Dealing with Doctors

Doctors are busy people. If you know that you have a lot to discuss with your doctor, then ask when booking the appointment if you can have a double appointment or can have the last appointment of the morning or afternoon when it will be less rushed. Make sure you are prepared for your appointment and know what you want to ask (a list for yourself may help with memory): if you cannot remember everything you wanted to ask, the doctor is unlikely to have time enough to sit and wait. Also do not turn up to your appointment with pages and pages of information printed out from the internet or journals that you want the doctor to read: they are unlikely to have the time. If you find information you want them to consider, then note down the main points and where they came from.

Remember that doctors and many healthcare professionals are only going to be interested in reputable information sources. The gold-standard of evidence in medicine is being able to back up any statement, especially as regards treatments, with multiple double-blind placebo-controlled scientific trials. Peer-reviewed medical journals (such as those that appear on PubMed) are considered reputable sources of information, as are NHS publications, national charities and some other internet sources such as netdoctor.co.uk, although these may not always have accurate information. If you find some information on the internet that you want to discuss with a healthcare professional, specify where you found it, rather than just just saying you got it off the internet.

Some doctors like lists to be given to them, others don't. It can be helpful, especially at new appointments, to take a list of all your symptoms, what tests you have had done and when and what medications and treatments you have tried. However, don't insist that the doctor takes this. They may get you to fill in a questionnaire that goes through those points anyway, or they may prefer to ask you questions and make their own notes, but in either case, your lists can help your memory.

Taking someone along to appointments, especially at first, can be very helpful, but taking too many people along can make the appointment confusing and in some cases the doctor may want to talk to you without your companion - for example, if asking about family stresses, they may prefer for your spouse to not be in the room. You need to be able to concentrate on the appointment, so taking children along can be an issue. Remember that you can always ask for a nurse or other staff member to be present if you are uncomfortable.

Try and stay calm when talking to healthcare professionals. Although seeing you in tears may help them to realise how badly you are doing, shouting rarely helps. Showing healthcare professionals respect can mean they are more likely to show you respect.

Learn how to talk about your symptoms. If a healthcare professional asks you to describe your pain, then saying "it hurts" doesn't help them to work out what sort of pain it is. Use descriptive words, such as burning, stabbing, aching, agonising, etc for pain, and learn to work out how to separate your symptoms so as to describe them - if you are getting migraines or headaches for example, then make sure you mention this instead of just saying "everything hurts" as specific treatment may be of more use than painkillers.

Tips for talking to & dealing with doctors:

* Doctors are busy people. Learn how to work around this.

* Remember that doctors and many healthcare professionals are only going to be interested in reputable information sources.

* Some doctors like lists to be given to them, others don't, but they may still be of use to you.

* Taking someone along to appointments, especially at first, can be very helpful, but do not overdo this.

* Try and stay calm when talking to healthcare professionals. If you show them respect, they are more likely to show you respect.

* Learn how to talk about your symptoms.

4 Replies

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  • Hi Lindsay,

    I have just copied your paragraph :

    * Ask for referrals, don't wait to offered them - or not offered them.

    Remember that the NHS Choose and Book system now means that patients referred to see a specialist are able to choose where they are treated from any hospital that meets NHS standards, which includes many private hospitals as well as all NHS providers. So you can now choose, for example, to go to the NHS FM Clinic at Guy's Hospital in London instead of your local hospital.

    On the choose and book system I seem to get a choice of 2 or 3 hospitals in my area only. I have just been to see my GP today to ask to be referred to a Professor in London and he is saying that it would have to get passed through the PCT however he would want me to go to my local specialist clinic first. I don't want to do this I want the best treatment after being passed from pillar to post!!!

    Any advice on how I can actually get to London rather than Dorset for treatment?

  • It can depend on PCTs. The original article is now nearly 4 years old and there have been some tightening up of the referrals process in that time unfortunately.

    I would say, work out first what you want from a specialist clinic.

    Some of the multi-disciplinary aspects now available at Guys may not be of use to you for example, because travelling to London from Dorset is not sensible for repeat physio appointments. For physio and anything else you will need repeat appointments for at first, the closer to you the better, so if you can access this locally, do.

    Even a good clinic in the UK will be limited as to what they can offer. None that I am aware of offer myofascial release for example, despite the strong links between myofascial pain and Fibro. And the NHS cannot afford ongoing physio or hydrotherapy for people with chronic conditions, so then it is a case of trying it out on the NHS and trying to maximise the benefit of an initial course and then sourcing that treatment yourself.

    Specialist Fibro clinics in the UK are often best for accessing advice on medications if you are having to travel to get there. You may struggle to access some medications that could be of use because your GP or local doctors are not confident in prescribing them. And in that case, a specialist clinic can help advise your GP.

    Would your local Fibro clinic be Poole with Dr Richards? If so, it may well be worth trying that clinic first. I met with Dr Richards a while back and he is a good doctor with a genuine interest in Fibro and experience of treating it. If you go there and are not happy with the advice you receive, then you could push to go to Guys instead and the PCT would then be happier that you had explored local options first.

    With PCTs and NHS politics, it is often necessary to just jump through their hoops to get what you want.

  • im a fibro sufferer and i was refered to a rhuematologist im now under the very caring wing of a very nice & it seems highly qualified rhuematology occupational therapist ive only been once to the 1st initial appointment she talked to me for about 50 minutes explaining things the ins-outs of fbm now next time shes going to start working on bringing my fitness level up very slowly of at present feels like -0 (zero) concentrating on my breathing etc. i know its going to be a long hard struggle/battle but im willing to give it a bash & give it my best effort well what have i got to lose it can only be a positive experience and its going to improve on where im presently at 100% effort from me ! x :)

  • bpatsy is actually her other half peter its because im using her email address as i have,nt got one. so its (PETER B.)

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