A lot of people feel well on their medication and conclude that it has made them better and stop taking it. They don’t feel any different for a while as it takes time to leave the body just as it takes time to build up. Eventually it is very likely they will become ill again but not connect this with stopping the medication.
For a lot of people, particularly with severe symptoms, medication is necessary to keep ‘OK,’ but managing without it is usually their choice. No one can be forced to take anything without using certain Mental Health Act sections.
This often creates a dilemma. It may be necessary to monitor a person’s medication without being intrusive, pressurising or sneaky. (Actually sneaky may well be OK, just in times of crisis. If you happen to see tablets in the toilet, then that will help the MH team know what’s going on, hopefully while keeping your part confidential – if that’s possible).
Medication can be a very touchy subject. Carers may find themselves trying to point out the connection between not taking it and getting unhappy consequences. A daily battle of wills met with a flat refusal is hard to win in the short term. People can settle into a routine quickly or fight against it for several years. You may find yourself an observer as they go round this problem for a long time. Advice from their peers may be more persuasive than any you can offer!
“Having had time to think, the best advice I could offer is once the service user and Carer have visited the GP do not start taking any prescribed medication until you have read around the diagnosis, looked at why the medication was prescribed and the side effects. Ask if there are alternatives, combinations of drugs at lower doses to reduce side effects and be as informed as you can; you can then ask the right questions to get the right answers.”
The recovery model
GPs or psychiatrists will probably not give a prognosis during the early stages, as it may well be impossible to tell with any certainty exactly what is happening or how long it will last. Some people recover and go back to their old lives, but the more severe the condition the more likely there will be some long lasting effects.
Most medication controls the symptoms rather than removing the cause. Recovery usually means complete restoration of health and a return to the life before the illness, yet the MH professionals who work with people over long periods often use this word. Is this unrealistic?
The long term aim is to lead a life which has real meaning for the individual, including feeling positive and hopeful about themselves and their identity. Crucially, it involves developing independence, which means taking as much control and responsibility for their own wellbeing as possible. This presents a balancing act between the risks in any situation of failure, setbacks, distress and harm, while offering maximum freedom and opportunity.
This may include the service user being aware of:
• What makes them feel better or worse
• If they can use what makes them feel better when they start to feel bad
• How they can start controlling the condition, rather than be controlled by it
The concept of recovery has a different meaning within MH and this can cause confusion. Recovery is often defined as ‘living well with a disability or illness’ in contrast to the way that people used to be treated. Historically patient care involved medicating, monitoring and little else. Long stays in hospital resulted in loss of skills, low expectations of a fulfilling life and institutionalisation.
This may feel a risky process after the person you care about has been through such a traumatic experience, but too much looking after can be unhelpful and sets up long-term tensions and frustrations. A teenager has to be given the opportunity to develop adult skills despite the obvious risks. This may feel similar – handing back responsibility and encouraging self-care, often when your first instinct is to protect. In the long term this approach, although sometimes nerve racking, will result in a better quality of life for them and for you.
It helps for you to appear positive and hopeful about the future. Service users can become very introverted and depressed, lacking confidence in themselves. Remarks that imply you believe they will make progress and meet new challenges in the future can be encouraging. Pressure to move too quickly, or unrealistic goals, can do just the opposite. It’s a fine line!