Many people seem to have bad experiences of mental health care in the NHS, yet relatively few complain. More complaints would put more pressure on NHS managers to improve. So why don’t more people complain?
Part of the reason is that people do not know what standards of care to expect. So here I try to set out some guidelines to act as a warning that mental health care might be going wrong.
These guidelines are not specific to the NHS. Even if you are having mental health care from some other provider, outsourced by the NHS or paid for in some other way, these guidelines still apply.
There are no clear rules in these matters, though. Most of these guidelines are generalizations that might not always apply in particular cases.
On the other hand, you do not have to be certain that you have been badly treated in order to make a formal complaint. A formal complaint is only the starting point of an investigation that should establish whether you have been badly treated or not.
You are entitled to complain even when it is not yet clear whether you have been badly treated. The outcome of the investigation might be that the complaint is not upheld, but you will understand your situation better.
…of the 181 responses received…
38 per cent of respondents reported abuse…
Only 20 per cent of service users who felt they had been abused actually made a complaint.
Mind itself does not even have a complaints procedure, and it does not seem to have published the full survey results online, so the quotes above are from an unreliable source that gives somewhat different numbers in different places. But even taking into account that Mind supporters may not favour making complaints or presenting data clearly, this is a disappointing result.
Mind’s view, and its interpretation of the survey, seems to be that individual healthcare professionals should be blamed when NHS departments are badly run. Fortunately, that has never been the Department of Health’s view, not even under the previous government.
When a service is sub-standard, the people who can fix it are the local managers who operate the service. Protecting local managers from complaints and from whistleblowers amongst their own staff while encouraging blame, as Mind seems to advocate, can only make services worse.
All NHS Trusts, private healthcare organizations and the professional bodies of mental health clinicians have complaints procedures, so there is always someone whose job it is to investigate and act on complaints.
In the future, if the present government’s proposals are put into action, making complaints about sub-standard care in the NHS will be much easier, because local councils will have HealthWatch groups that can help.
The warning signs
Here are some of the warning signs to look out for. They are in no particular order, and the list is not intended to be comprehensive.
Warning: You have had symptoms of a mental illness for more than a year without improvement.
In this private psychotherapy practice, patients are usually discharged completely cured after a few months of treatment. Let’s give the NHS six months for the bureaucracy to get around to treating you, and another six months for a possibly inexperienced therapist to make a difference.
After a full year, even the NHS should be able to make a very significant improvement in the vast majority of mental illnesses. If that has not happened, it’s a warning sign that your treatment might be inadequate.
This is only a guideline. Some illnesses really do take a long time to treat, and a few conditions are not curable at all. Even so, difficult or incurable conditions are very rare, and even those conditions respond to appropriate treatment to a noticeable extent after only a few months. A full year without improvement is a clear warning.
Warning: You are receiving support, but not treatment, from mental health professionals.
Patients in this practice almost never require support. This was brought home to me last week when I found myself on the ‘phone trying to organize support for someone. I realized it had been a couple of years since that last happened — the exceptions proved the rule. (After a bit of Googling and a few calls I spoke to a lady in a specialist local voluntary organization that I think will be excellent.)
Expert support is occasionally useful, especially if you do not have other sources of support in your life, or if you have other challenges to deal with in addition to mental illness. But support without effective treatment maintains your illness, which can make it harder to treat eventually, and possibly put your life at risk meanwhile.
This is only a guideline. For example, some illnesses are difficult to diagnose. A period of support and observation is sometimes useful as a way to establish what is really wrong, so that you can be given effective treatment later. However, that kind of tactic is rare, and if it applies to you then you should certainly expect to be told about it in advance. Support without treatment or explanation is a clear warning.
Warning: You have access to a crisis team, but they do not respond in a crisis.
If you are offered access to a crisis team, and then you have a crisis, the crisis team should respond to the crisis.
Some crisis teams really do have more crises to respond to than they can cope with. However, only a formal complaint and investigation can establish the facts. Just one failure to respond by the crisis team can lead to death or permanent injury, so if you experience a failure to respond be sure to make a formal complaint — it might help to protect you or someone else in the future.
Warning: Your treatment does not match your diagnosis.
When you are diagnosed with one illness, you should not find yourself being treated for a different illness. If that happens, it might indicate that medical staff are confusing you with another patient. Inappropriate treatment might make you worse or prolong your illness.
There are two ways this commonly happens. One is that you are diagnosed with one illness, but then you are prescribed drugs (or other treatment) for a different illness. This is only a guideline, because some drugs and treatments can be used legitimately for a wide range of conditions. Even so, you should question any apparent mismatch between your treatment and your diagnosis, and if the explanation does not make sense to you, it is a clear warning.
The second way it happens is that you are formally diagnosed with one illness, but then a professional remarks casually that you have a different illness. If you let it go unchallenged, word can get around the professionals who treat you that you have that different illness, making it harder for you to establish the truth and obtain the right treatment.
Again this is only a guideline. If you have a complicated condition, then sometimes professionals consider an alternative diagnosis for a while before changing your diagnosis formally. During this period there might be some legitimate doubt. Even so, it is in your interests to make sure any confusion is cleared up as soon as possible. If the explanation does not make sense to you, it is a clear warning.
Warning: You are diagnosed as having borderline personality disorder (also known as emotionally unstable personality disorder).
Borderline personality disorder (BPD) is so often misdiagnosed that simply having that diagnosis is a warning sign in itself.
Of course, some people really do have BPD, and you might be one of them. To make certain, first ensure that your diagnosis is in writing in your medical notes, and that the diagnosis was made by a named psychiatrist who signed it in your notes. Then get a second opinion from a psychiatrist who is at least a consultant in another NHS Trust or a very experienced private practitioner. If there is any irregularity or disagreement in the diagnosis, it is a clear warning sign.
Warning: Your treatment causes you long-term distress.
Some treatments can be distressing. For example, drugs can have unpleasant side-effects, and psychological treatments can sometimes be intensely disturbing. But in both cases the distress should be only temporary, and the improvement you feel should quickly outweigh it.
This is only a guideline, and it is a difficult one to interpret. If you feel distress that is caused by your illness, then it is wrong to blame your treatment. And if you feel the professionals who are responsible for your treatment really care about you and want you to get through the distress, then it makes it easier to bear.
Do not tolerate distress that seems to be caused for its own sake, that seems to have no end in sight, or that is caused in an uncaring way. Professionals should be able to explain to you how and when the distress will end. If their explanation makes no sense to you, or if the distress does not end, it is a clear warning sign.
Warning: No one understands you or cares about you.
Mental health care has that word ‘care’ in it because it really is care, ideally. If you are treated in an uncaring way, or by people who do not understand you, then that is a warning sign that your treatment might be inappropriate.
This is only a guideline. The NHS, in particular, is a bureaucratic system that makes it difficult for people to care. Staff are often stressed, poorly trained and engaged in ongoing conflict with their managers. There can be culture and language barriers, gender differences and generation gaps.
Even so, there should always be at least one person with a significant clinical role in your care team (not a cleaner or administrator, for example), who really does care about you and understand you. If you do not have even one person like that amongst the professionals who treat you, then you are not receiving appropriate care.
The system in the NHS is that managers only get to know about things going wrong if someone tells them. If things are going wrong for you, the way that you can tell the managers is by making a formal complaint. It’s the system.
It is important to realize that a complaint is not an accusation. You are not asking for someone to be taken out and shot. A complaint is only the start of an investigation to find out what, if anything, went wrong. Without these investigations, nothing can ever be fixed.
You are likely to get better treatment after making a complaint, even if your complaint was not upheld. Freely flowing feedback from patients to managers improves not only your treatment, but other people’s treatment too. There should be more of it.