Hospital Meetings

Meetings with hospital doctors are a common occurrence for many parents of a young person with ME/CFS, but understandably can be filled with stress and worry.  When a child is first ill, parents want things sorted out straight away.  Instead, they often wait weeks for an appointment with a consultant, and as ME/CFS is a complicated illness it can be difficult to discuss all the problems in the short appointment time allotted.  Parents can feel pressured and rushed, and may explain things badly or forget things they wanted to mention.  Doctors may suggest treatments that the parents or child are wary of, but not explain the reasoning behind their suggestion.  Parents may feel too intimidated to disagree, or be unable to find the right words to discuss their concerns.  Having waited weeks for the appointment, the parents and child can sometimes leave feeling they have gained nothing, and being anxious that the doctor is going to advocate a treatment method they think may make the situation worse.

In some cases parents are requested to attend ‘multi-disciplinary’ meetings where many medical professionals are present, such as paediatrician, physiotherapist, psychologist.  The sheer number of professionals at these meetings can leave some parents feeling intimidated from the beginning.

Here are a few tips and techniques to help parents feel confident during these meetings:

Before the Meeting

• Talk to the young person (YP) about what they want from the meeting. Together make a list of all the issues that need raising at the meeting, then decide upon the single most important thing on that list.
• If it is impossible for the YP to attend the meeting, suggest they write a note or record a message onto audio tape to take to the meeting so that everyone, professionals included, feels that the YP is having some input to the process.
• If the YP is attending the meeting, agree whether they will do the talking or whether they would prefer to leave it to the parents. If the YP is to do the talking, parents can be ready to help by prompting them if they appear stuck, or taking over if asked to do so. This can be explained to the doctors at the start of the meeting so that it is not misunderstood.
• Wherever possible, both parents should attend the meeting. This provides mutual support, relieves the pressure on a parent attending alone, and reduces the risk of being labelled an over-protective mother/father.
• If you have previously felt intimated by multidisciplinary meetings, it might help to visualise the meeting and decide beforehand where you are going to sit. Some parents like to sit next to each other to get strength from one another. Some prefer to sit opposite each other to give encouraging eye contact and nods. This position breaks up the ring of professionals so it can feel less like an interview panel!
• If you find it difficult to remember what has been discussed at meetings, arrange to take an extra person to the meeting to take notes, so that both the parents can concentrate on listening and participating. It is important that the note-taker is up-to-date with the family’s circumstances and the YP’s illness.

Think about what to say

• Doctors are human, which means they respond to the way people talk to them like everyone else. If people are told to do something in an angry directive tone, then they tend to resist doing that very thing. A good strategy for not sounding too demanding is try to get the doctor to understand the nature of the problem before asking for help:
  ‘My daughter is feeling fed-up having to stay in her bedroom all day, and we think a change of scenery would really help. However she is too heavy for us to carry and she has tried but just cannot manage to get herself up and down the stairs. Would you be willing to help by writing to an Occupational Therapist asking for assistance with this?’
  is more likely to get a helpful response than:
  ‘You have got to get us a stair lift.’
  Or:
  ‘We can’t bear to watch our daughter suffer with these headaches. She is in agony day after day. When she is like this she is unable to have a conversation with anyone, let alone do school work. Nothing we have given her so far has even begun to touch the pain. We are desperate – please can you help us. We have heard of a paediatrician who is an ME specialist, would you be willing to talk to him to see if there is any anything he knows of that might alleviate our daughter’s pain?’
  is more likely to get a helpful response than:
  ‘She gets really bad headaches.’
  It is estimated that 70% of patients (not just ME patients) complain about feeling tired, so ‘she feels tired all the time’ does not tell the doctor much, whereas:
  ‘She wakes up feeling exhausted. It takes her over an hour to wake up, and by the time she has managed to get dressed and come downstairs all she can do is lie on the sofa for the rest of the day. Even having a conversation or going to the toilet is exhausting for her. When my 85-year-old mother had double pneumonia she was not as exhausted as this’
  gives the doctor a much better picture of how severe the fatigue is.
• If parents need help but don’t know what the doctor can do, they can describe the situation and end with phrases such as ‘What do you suggest?’ or ‘How can you help?’ This effectively passes responsibility for resolving the problem to the doctor without sounding too unreasonable or demanding.

• Doctors can unintentionally say things that leave parents feeling angry or frustrated, which can tempt the parents to retaliate aggressively. This can be unhelpful at best, counter-productive at worst. The following are good patience techniques to adopt at these times:
  1. Count silently to ten (parents will look like they are considering what the doctor has said).
  2. Remind themselves that doctors don’t get taught much about ME/CFS at medical school and probably see very few children with it. It is unreasonable to assume they will be experts on the subject.
  3. Remind themselves that the doctor is unlikely to know that his/her remarks have caused upset, and almost certainly did not intend to.
  4. Explain calmly to the doctor what it is that they disagree with, eg ‘I do not believe that what you are suggesting will help – in fact I think it will make things worse because …….’
  5. If necessary make an excuse to leave the room and take slow deep breaths before returning.

In a tight corner

• Parents can sometimes find themselves feeling pushed to accept something that they are very uncomfortable with and can’t think how best to respond. In these circumstances it is helpful to take a time-out in order that a decision is not made in haste:
  
  ‘We feel we need time to go away and consider this and discuss it with my child/GP/OT (anyone who is not actually at the meeting) before we can come to a decision’ gives parents space to consider the proposal and to get advice or information from other sources, such as the AYME web site or helpline.

For further information see the AYME info sheet Getting the best from your doctor (free from the AYME web site or email, or by post on receipt of SAE).

Article last edited on Tuesday 28th July 2009                          Printable Version