My eldest son, Mark, suffered lack of oxygen at birth and, as a result, he has brain damage. He is now thirty years old and has a variety of medical problems. I would like to share some of my experiences with doctors and hospitals over the years.
My first meeting with a consultant was when Mark was one year old. He was not crawling, creeping or verbalising like he should. Our GP suggested that we see a neurologist to check on these developmental delays. We went to that consultation with what we considered a normal baby, and emerged from it with a handicapped son with very limited potential. In one sentence, all the hopes and dreams we had for our child vanished and our lives changed forever. We parents need very careful and gentle handling at such a time, and I believe we needed bereavement counselling. We did not have the child we had expected, and we also did not have the ‘normal’ child we thought we had had for a year. I know there is no easy way to break bad news like this to parents, but often it is done by a doctor who blurts out the facts without even making eye contact, and then leaves quickly. Communication is not always a doctor’s strong point, so maybe the news should be broken by a person with very good ‘people skills’, e.g. a counsellor. The doctor could come in later to discuss the medical implications of the diagnosis. The basis of medicine is scientific, but the training of doctors should be broadened to include the skills to meet the overall needs of people. After we received the diagnosis and prognosis on our son, we didn’t take in anything else the consultant said. We were in complete shock and sat for a long time in the car crying.
Now when I bring Mark to a doctor for a first consultation I have a written medical history. I leave Mark in the waiting room while I have a chat with the doctor and give an outline of Mark’s problems and level of understanding. I ask him/her to ask Mark if he would like me to answer questions for him. Mostly this works well, but on one occasion an eye specialist disregarded my request and insisted on directing her questions to Mark. When I tried to intervene she ticked me off for interrupting and asked me to stay quiet. She did an eye test and produced a prescription for glasses which I declined. I told her that my attempted interruption was to explain to her that if Mark is given a choice between ‘A’ or ‘B’, he would always pick ‘B’ (the latter, as it was the easiest for him to remember). I suggested that she repeat the eye test putting the choices in reverse order—which she did—and he then picked ‘A’ each time. She could have saved a lot of time if she had listened to me in the first place. Another eye specialist asked Mark to read the letters on the top line of the chart which was up high on a wall. I suggested that they needed to be pointed to with a stick, as he didn’t understand the instruction and someone who doesn’t read would not automatically read the letters from left to right. The doctor said that this was not possible as the chart was too high and he didn’t have a stick. I went out to his receptionist and borrowed a sweeping brush, stood on a chair and pointed to the letters on the chart with the brush handle. It worked brilliantly.
In 1990, Mark had three epileptic fits at monthly intervals. I documented everything about them and could see a common situation in each attack. He was always going down steps or changing levels in some way. On close study, I realised that he could not assess the depth of a step and he put his foot into infinity each time. This caused his stress levels to rise to such an extent as to cause a fit. I found it difficult to convey this scenario to doctors who only saw Mark in an indoor setting which is not a problem for him. I used to say ‘I wish I could have a consultant for a day to see Mark’s difficulties out of doors’. I decided that if the doctor couldn’t come to see our life’s problems, I would bring our life to him. I made a video of three typically stressful situations and asked the doctor to view it before our next appointment. He and other doctors said they really hadn’t understood the problem before the video, and that medication was unnecessary as the trigger was clear and avoidable.
If Mark is in hospital, I need to be there for all his waking hours. He is very anxious to please always, and he thinks that doctors and nurses would like him to have anything they suggest. If asked if he has a pain in his head or stomach, he always answers ‘yes’, so I get a note put on his file to this effect. Last year he had an operation for a bowel obstruction, and when asked by the nurse ‘When did you last pass water?’, he answered, ‘On my holidays in Cork’. I explained that to Mark that question had meant ‘When did you drive by a river?’
Recently, I was to visit a gynaecologist, and as the appointment was at 4.30pm I had Mark with me. I walked into a room full of young pregnant women and their partners. I felt very uncomfortable, as I felt my son represented what can go wrong with a pregnancy and birth. I was tempted to explain to the receptionist how I felt, and to ask to be seen quickly, but I was worried that that might be misinterpreted as wanting to jump the queue. However, someone must have been sensitive to the situation; I was seen very quickly, for which I was very grateful.
Over the years I have met a lot of caring and compassionate medical people who have regarded my contributions on Mark’s health problems as helpful. I have also met some arrogant doctors who should have studied veterinary science instead of medicine! Animals don’t ask questions or answer back. Fortunately, those doctors were in the minority, and I didn’t pay them a second visit. I believe some doctors have a double standard of medicine when it comes to disabled people, and that perhaps the same level of investigation is not done on the problems that they have.
CHANGES I WOULD LIKE TO SEE:
- Parents should be listened to more. We are trying to be helpful.
- Parents to be treated as part of a team and informed of all treatments available here and abroad, irrespective of cost. Let us decide how far to go.
- If a patient/parent asks for a second opinion, the doctor should not be offended. Nobody can know everything.
- It should be possible to change doctors if the personality of the doctor doesn’t suit the patient/parent, as it is very important to relate well when making important decisions.
- A fish tank, TV or toy box in the waiting room helps to occupy a person who can’t read, e.g. young children and mentally disabled people.
- I know it can be difficult for doctors to assess the neurological age of a disabled person on a first meeting. Asking about their favourite hobby, TV programme, pop group, etc. usually offers a guideline. Mark always brings a book about his hobby, as it is always easier to understand imperfect speech if one knows the subject-matter.
- The use of video ‘evidence’ may be helpful to demonstrate a health or behaviour problem.
- Abstract terms/’medical-speak’ should not be used with a person with a learning disability.
- People who pursue a career in medicine need compassion, empathy and a good ‘bedside manner’. Life is hard enough for disabled, old and ill people, without having to encounter medical staff who do not possess these qualities.