Your doctor

Download AYME's GP Leaflet here and take it with you when you next have an appointment.

Different kinds of doctors
Different kinds of beliefs
Understand where they're coming from
See your doctor regularly
Effective two-way communication
Home visits
If you're unhappy about something

You'll want to get the best out of time spent with your doctor, so here are a few tips that you may find useful to help you build a good relationship together.

Different kinds of doctors

GPs – General Practitioners are the doctors you see at your local surgery. They are more involved in providing day-to-day support for M.E./CFS patients than hospital doctors are. A good GP is someone who is open-minded, and the best GP is someone who has another young patient with M.E./CFS who really understands your situation first-hand.

DGH (District General Hospital) Paediatricians – Hospital doctors who look after children and young people with all kinds of conditions and illnesses.

Community Paediatricians – Paediatricians closely linked to school medicine and education. If you are under 16, you will come under the care of one, and their aim is usually to get you back into school as quickly as possible. If your community paediatrician says you should go back to school even though you are still not close to being ready, your carer can write a letter saying that they don't accept that doctor as being responsible for you. Bear in mind, though, that this might be because they don't know about your condition. By putting them in contact with AYME, who will introduce them to a specialist, you will not only help yourself but also others who follow after you.

Child Psychiatrists and Psychologists – (Child & Adolescent Mental Health Services, or CAMHS). These are doctors who look after mental health, and how it affects our physical wellbeing as well as how we feel in ourselves. Some recognise M.E./CFS as a physical illness and help with secondary psychological problems, others look for psychiatric/psychological causes. The best will help you adjust to your new circumstances by adopting positive coping strategies, working out a pacing plan with you and prescribing for any appropriate symptoms that can be helped with medication.Don't discount them without meeting them - awareness is increasing, and some CAMHS teams are now providing excellent services.

supporting you with your management plan and prescribing for any symptoms that can be helped with medication. Don't discount them without meeting them awareness is increasing and some CAMHS teams are now providing excellent services.

Teaching Hospital Sub-Specialist Paediatricians – These are the hospital doctors who specialise in one particular area of child medicine, such as your blood (haematologists), your nervous system (neurologists) or your immune system (immunologists).

There are a few specialist doctors for M.E./CFS. and the team on the AYME information and helpline can tell you where your nearest one is based.

Different kinds of beliefs

Not all doctors see M.E./CFS in the same way, perhaps based on previous experience, or what they have read about the condition. We know that patients receive different responses, depending on the attitude of the doctor.

Positive response – Usually from doctors who have a number of patients with M.E./CFS who believe it to be a physical illness that can also affect your mental and social health.
Open-minded – Usually from doctors who don't know much about M.E./CFS but are willing to listen, find out more and support you.
Negative response – Usually from doctors who don't believe in M.E./CFS, or consider it to be completely ‘all in the mind.' The good news is that there are fewer and fewer doctors with this view, and that's down to positive work by supportive professionals, patient groups, the publication of the Chief Medical Officer's report and guidelines from other authorities in the UK. However, research does show that only 50% of GPs will be comfortable in diagnosing M.E./CFS, so make sure they refer you on to someone who will.

Understand where they're coming from

Doctors are human – they can make mistakes! Most doctors are not taught about M.E./CFS at medical school. Your doctor may have a lot to learn from you and may feel uncomfortable about this as much as you do. It's frustrating for them that there is no test for M.E./CFS and they cannot give you a cure. Let your doctor see that you understand this, but that you still need them for support and advice.

Doctors tend to be governed by evidence-based medicine, which means that it can be hard for them to do anything that hasn't been scientifically proven. So when you ask for something, it may be out of your doctor's hands, especially if your doctor doesn't have prior experience of M.E./CFS patients or treatments.

And even if your doctor is sympathetic, they may say the wrong thing at the wrong time. Try not to take it to heart and put yourself in their position - if you were talking to someone about an illness you knew little about, might you accidentally say something that upsets them without meaning to?

Let your doctor know you don't blame them for not having a cure, then let them know what they can do for you. Thanking or praising your doctor when they listen or help will make them feel that they are doing something for you, even though they can't cure you.

See your doctor regularly

See your doctor regularly because It helps build a relationship, and over time you should feel comfortable with each other. Plus:

  • They may suggest ways of relieving some symptoms, even though they won't have all the answers.
  • If you become ill with something extra, your doctor will know what your health was like before.
  • You may need your doctor to write letters for you for school/work/benefits.
  • Your doctor can refer you for walking aids and wheelchairs.
  • You may need a home visit at some point.
  • It's your doctor's job to support you!

Effective two-way communication

It's nerve-racking to talk to someone who can be judging you in some way. So it pays to prepare for your appointments so you – and your doctor – can feel more confident and comfortable.

No-one is perfect, and some excellent doctors have awful bedside manners! Your doctor's way of asking questions may make you feel as if they don't believe you, when all they may be trying to do is get an accurate picture for themselves as quickly as possible. Don't snap back if you don't like the question.

Listen to what your doctor says without interrupting; wait until they've finished. If you are polite and respectful to them, they are more likely to be the same with you. Don't be scared to disagree with your doctor, or say you don't understand. Calmly explain why you disagree or ask questions to help you understand better. You can ask them to repeat or explain things to you if needed, too. If you would like to try a treatment you've heard about, ask your doctor what they think of it and listen to what they say before making a decision.

You have the right to turn down treatment if you think it is unsuitable. However, it is best to listen to your doctor's reasons for suggesting the treatment before you refuse. What initially seems like a bad idea might not turn out to be so crazy. Conversely, don't just accept everything that is offered without taking time to think it through or researching the treatment. You might find it useful to say to your doctor "I will think about that over the next week/month and tell you what I think next time". Don't feel guilty about rejecting a treatment you feel would be bad for you, and try not to allow yourself to be bullied into it if you really don't want to.

  • Arrange appointments for your best time of day and rest beforehand so you are as ready as possible.
  • Write a short list of the things you want to say so you don't have to keep it all in your head.
  • Try to be calm and relaxed - it's easier to say what you want when you have a level head. But don't give the impression you couldn't care less!
  • Answer the doctor's questions honestly and describe how your symptoms affect you.
  • Be yourself. Don't perk up or put on a special effort if that's not how you usually are; your doctor needs to see how you are really feeling.
  • Be firm when describing how you feel and what you want, but not aggressive or confrontational.

No-one is perfect, and some excellent doctors have awful bedside manners! Your doctor's way of asking questions may make you feel as if they don't believe you, when all they may be trying to do is get an accurate picture for themselves as quickly as possible. Don't snap back if you don't like the question.

Listen to what your doctor says without interrupting; wait until they've finished. If you are polite and respectful to them, they are more likely to be the same with you. Don't be scared to disagree with your doctor, or say you don't understand. Calmly explain why you disagree or ask questions to help you understand better. You can ask them to repeat or explain things to you if needed, too. If you would like to try a treatment you've heard about, ask your doctor what they think of it and listen to what they say before making a decision.

You have the right to turn down treatment if you think it is unsuitable. However, it is best to listen to your doctor's reasons for suggesting the treatment before you refuse. What initially seems like a bad idea might not turn out to be so crazy. Conversely, don't just accept everything that is offered without taking time to think it through or researching the treatment. You might find it useful to say to your doctor "I will think about that over the next week/month and tell you what I think next time". Don't feel guilty about rejecting a treatment you feel would be bad for you, and try not to allow yourself to be bullied into it if you really don't want to.

Home visits

Don't stop seeing your doctor if you can no longer get to the surgery. Your carer can explain to the surgery that you are too poorly/immobile to attend and politely request home visits. It is best to avoid sounding demanding, but the surgery should find a way to support you and monitor your illness when you are this unwell.

If you're unhappy about something

Don't bottle it up. Calmly work out why you are unhappy (be specific) and write down the reasons (be concise). It is unreasonable to expect your doctor to guess that you are unhappy, so if you want your doctor to know you are upset, make an appointment to discuss it or contact them by phone or letter.

Try to be diplomatic: you will only make the situation worse if you make your doctor feel like they are being criticised, disrespected or attacked. Or if it's not important in the long term and you don't want to talk to them about it, try to let the incident wash over you and put it down to experience, otherwise it could make you bitter and spoil your future relationship with your doctor. It can help to talk to someone else close to you who understands your illness, so that you can share your feelings. Try to have a laugh about it so that it doesn't build up into an even bigger problem.

Communication tips

Staying alive, by Dr Phil Hammond

In thiscid:image001.png@01D0D689.A8358DD0 committed and compassionate book, Phil Hammond - a supporter of AYME and doctor, journalist, campaigner and patient - argues for a bidet revolution in the NHS (from the bottom up!), with patients leading the charge. 

What we can do for ourselves to live well often far outweighs what modern medicine and the NHS can do for us. And when we do need to use the NHS, getting involved, speaking up and sharing our expertise can improve not just our care, but the care of others.

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Dr Phil shares his own experiences of working in and investigating the NHS for 30 years, and combines it with the experiences and tactics of inspirational patients and carers, some of who have survived and thrived in the NHS, some who are planning a gentle death at home and some who have suffered greatly but are determined to improve the NHS so others don't have to suffer.

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Changing your doctor

You have the right to change doctor if yours isn't supportive, but bear in mind that doctors have the right to refuse to take you on. Don't search for the impossible – doctors don't have a cure for M.E./CFS.

To find a new doctor, talk to people in your local area or AYME to see if they know anyone. And remember, changing doctors doesn't necessarily mean changing practices - doctors within the same practice often have different opinions and attitudes.Your own GP may suggest a colleague he/she knows who has an interest in M.E./CFS.

It might be possible to arrange preliminary appointments with a prospective doctor so that you can ‘check them out' first. It might be helpful to write a brief history of your illness and symptoms for your new doctor so you don't have so much to go through at the initial consultation.

Give your new doctor a chance – it takes time to build a relationship. Don't be put off if the doctor doesn't know about M.E./CFS – it doesn't mean they are a bad doctor. If they are friendly, supportive and open-minded they will learn as they go along. And if you are unfortunate enough to have had a bad experience with a doctor, don't tar them all with the same brush.