Maxfacts

It is such good news that more and more people survive major head trauma, or head & neck malignancies and other serious maxillofacial conditions, and after a recovery period are able to take back control over their life, albeit in many cases in a ‘new normal’ mode of operation. The burden of consequences of disease, injury and/or treatment can be considerable and is highly individual, so support with finding individual and practical ways to deal with, and work around, lasting dysfunctions is vital in the process of returning to normality. This is even more important given that more people after such serious episodes want to, and do return to work.

Many maxillofacial patients in this group have very specific difficulties and needs for support to manage everyday life. It seems difficult to find specialised occupational health support to meet these needs. We have tried to find established and easily accessible sources and centres of specialised support and have failed. In fact, it seems that in many cases patients and carers are the experts who can educate the professionals. We believe that there are occupational health experts out there, somewhere, who specialise in maxillofacial conditions but we have not found them. We speculate that some larger centres engaged in major maxillofacial and head & neck surgery and aftercare may have working contacts with specialised occupational health experts. Alternatively, professional bodies such as the Royal College of Occupational Therapists in the UK may be able to help and give advice.

Below we report briefly from experience and signpost other areas of the website, sharing some tips & tricks and ideas that may we worth exploring (keeping in mind that different people will have different needs). Some, probably most, practical solutions and work-arounds will apply to home and the work place, but depending on somebody’s profession there may be additional specific practicalities to consider at the work place.

• A common set of problems, and typically of the highest priority as reported by patients, are difficulties with oral food intake (or non-oral feeding) and with speech.

• Mobility and strengths of various affected body regions can usually be much improved by physiotherapy and specific exercises, when combined with a degree of perseverance and patience.
• Some people are concerned about their facial scars and appearance when going out or to work. If that is a concern, using camouflage make-up can help. Learning how to use it and how to perfect its application also has some beneficial effects in becoming less concerned about ‘appearances’ as one literally pastes over the issue and can watch it being made invisible, not hiding from it. The individually best strategies to deal with ‘appearances’ cover a whole spectrum, from said camouflage make-up all the way to actually highlighting a problem area. An anecdote may illustrate this. Like most people after major surgery and radiotherapy treatment to the head & neck region, a middle-aged lady found herself with dry mouth and lips and the need to keep mouth and lips moist. Apparently following some initial impulse, an impressive collection of lipsticks quickly built up, including some bold colours (she convincingly explained that previously she would have never worn some very bright pink lipstick). But she also observed that her affirmative, almost aggressive ways to ‘wear’ her disfigurement and problems appeared to have helped others not to look the other way and being less afraid of talking with her, after some initial confusion. Spare a thought for men who are concerned about appearances and disfigurement: it is much easier for women to deal with such concerns, as that is socially accepted / expected behaviour but much harder for men! Common sense and creative ways is what is needed – and absolutely nothing should knock down confidence or the drive to deal with the issue, in whichever way works best.
• On a slightly more technical note, and equally a source of frustration at home and at work are telephones. Telephone conversations are notoriously difficult, especially using some mobile phones with poor quality microphones. This makes speech with characteristic distortions after some major maxillofacial surgery difficult to understand. Somebody who can have a face-to-face conversation in a quiet environment without too many problems may find themselves unable to talk over the phone and make themselves understood. Sometimes a good quality landline phone may be all that is needed. However, for most struggling with telephone conversations this will remain a problem, a particularly frustrating problem when somebody wants to stay in touch and would normally use the telephone to make contact. We do not know of any convincing technical work-around for resolving the incomprehensible speech issue on the phone, other than considering a switch to text messaging or email, or similar non-speech platforms (and in the process learning to touch-type at the speed of light) for communication in remote. Perhaps a video phone-call via some computer platform / software is a practical compromise (even if microphones on standard computer hardware are even worse than those on mobile phones) because in this way the conversation can be enhanced by body language: the reason why for communication face-to-face there tend to be fewer problems, is mainly because body language is an additional helpful communication feature. For speech difficulties in face-to-face conversations, most people give it a try, opt for pragmatic solutions and if the conversation gets stuck, resort to pen and paper, or an electronic equivalent (a small note pad may be a useful gadget as it allows handwriting and drawing on the screen) to resolve the communication gap. Some people carry ready-made little notes as back-up. Conversation partners can make a very good – or a very bad contribution: if it is difficult to understand what somebody is saying, please DO NOT say ‘yes, yes’ to gloss over the situation. Maxillofacial patients are very good at sensing when the conversation gets stuck and the ‘yes, yes’ approach is deeply frustrating for somebody who tries hard to make themselves understood. Please DO persevere and keep on asking until the conversation is unstuck and all messages in both directions are fully exchanged, it is the best help one can give to somebody who is working hard on making their spoken communication work. A good way to get a conversation back on track, is to ask questions that can be answered by ‘yes’ or ‘no’ to find out how & where the communication got stuck. In this way it is usually possible to get the conversation unstuck – and not have wasted too much talking efforts that are then much better spent on the re-started conversation.
• At the work place, some larger employers may have an in-house occupational health support team. It is a little bit of a hit & miss situation if such an in-house support team will be able to offer competent support for the specific needs of maxillofacial patients (such teams are typically more used to dealing with the most common office worker problems such as back pain, stiff neck or other consequences of non-ergonomically sound desk and computer arrangements in the office). It is worth a try to engage with such a support team, but maxillofacial patients will have to be prepared to explain all of their difficulties in detail, and hope that in this way the occupational health team will be able and willing to make helpful recommendations about workplace adjustments to the employer. For example, it seems to be difficult to understand that for some talking is hard work and a role adjustment with less need for that makes a huge difference. Or, installing an air humidifier at the work place can make a big difference, as dry air is problematic for many. Individually flexible office / work hours can have a major impact on somebody’s work life. A flexible and individual work schedule is a very good mechanism to manage difficult (and slow) eating circumstances, be it oral or non-oral food-intake. For some people, travel on business is a welcome distraction and interesting challenge, others seriously dislike it.

Overwhelmingly, all of the considerations here are about enabling participation.