The role of advocacy in psychiatric assistance in the U.K. – An overview of self-help groups

Il ruolo dell’organizzazione delle advocacy nel Regno Unito nel trattamento delle condizioni psichiatriche: una panoramica del gruppo di auto-aiuto

R. Elgie

Depression Alliance, London U.K.

During the course of this presentation I should like to suggest some answers to the following three questions.

Firstly why is there a need for self help groups. Secondly are they of benefit. Thirdly if the answer is yes, if so how? And then I would like to end by offering a few pointers as to what to do and what not to do as a group organiser.

In answer to the first question the evidence currently available tends to indicate that self help groups are an effective complementary treatment for people affected by depression. They provide a friendly, relaxed and non-judgemental environment where people are free to express their views and fears without any undue time constraint which, of necessity, has to be imposed within the surgery setting. Attendance at a self help group is entirely voluntary yet in my own country they have continued to grow at a fairly rapid pace, driven by demand of the members. This can only mean that people with depression obtain some benefit from the groups either as a consequence of mutual support or the provision of an opportunity to exchange views or to obtain reassurance when in the depths of a depression from those who have recovered or are well on the way to recovery. The findings of research carried out in America in 1996 and presented at the APA meeting in May 1997 indicated that psychological treatments should go hand in hand with pharmacological treatments.

In a sense a self help group can provide a psychological treatment at a very basic level.

It is commonly recognised throughout Europe that depression is greatly underdiagnosed by professionals and that there is a significant problem with compliance. Despite this, depression and anxiety disorders appear to be on the increase. You will be aware of the World Health Organisation’s report published in the summer of 1996 which predicted that depression will become the number one illness in the developing world in the year 2020 and number two in the developed world behind ischaemic heart disease. If these predictions prove to be in any way correct mental health professionals will need all the support and assistance they can obtain from other sources.

In my own country the Department of Health openly admits the fact that the “rule of halves” applies to depression. By this we mean that only 50% of people suffering from depression will actually seek medical treatment. Of those 50% who seek such treatment only half will be correctly diagnosed. Of that half only 50% will receive medication at a therapeutic level and of that 50% only half will actually complete the recommended course. The effect of this rule of halves is that of every one hundred people suffering from depression only seven will effectively be treated. Clearly we still have a long way to go in the management of depression.

We know from our research at Depression Alliance that even if a GP takes the trouble to explain at some length the nature of the illness known as depression the medication he or she has prescribed and possible side effects the patient will only absorb 30% of that information and therefore needs to have such messages reinforced. This can be best done through self help groups who work very much in concert with the medical profession. They can reinforce the same messages as the doctor, namely, that antidepressants are not addictive, that they need to be taken for more than just a few days and that the dose needs to be maintained even after they begin to feel better to avoid the danger of a relapse. Members of a self help group can explain and expand upon the side effects experienced and also reassure fellow sufferers that in the vast majority of cases the patient will adjust so that the adverse effects diminish to a most acceptable level.

In asking whether self help groups are of benefit, in my view the answer must be yes. They provide an environment in which the patient is free to make his or her own decision and as I stated previously, attendance is entirely voluntary. A group assists in the reduction of a sense of isolation so often felt by a sufferer and provides a vehicle for them to develop friendships outside the group.

We have not yet reached the stage of arranging a buddy system but certainly in the UK a number of group members adopt such a system and this in itself can often assist in aiding compliance by a patient who would otherwise “fall by the wayside”.

Self help groups not only reduce the sense of isolation to which I have just referred but also provide mutual support for members. Very often one member can suggest a helpful piece of advice to another and the latter will report a favourable response at the next meeting. This can provide a tremendous boost to self esteem as well as underlining the value of helping oneself. At our self help groups in the United Kingdom we do provide for presentations by professionals, for example, a pharmacist to explain exactly how and why antidepressants work. Other “professionals” will give talks on various complementary therapies such as cognitive therapy, meditation and reflexology. In this way a sufferer gains empowerment and we strongly advocate that they take what is of use to them and discard what does not help. All too often, a person with depression believes they are the only one experiencing certain factors and do not like to mention these symptoms to outsiders.

However, a self help group provides an environment of understanding by fellow sufferers and it can be highly beneficial to know that you are not alone and that others have encountered exactly the same experiences as you. In relating those experiences and successful forms of treatment, an ex-sufferer can speak with conviction as their knowledge has been acquired at first hand rather than through the medical text book or lecture theatre.

If one is able to understand how you might have come to suffer from depression in the first place this can aid recovery and can also assist in self management. In my view self management is of paramount importance for any long term illness as opposed to say flu or chicken pox which may be a minor inconvenience for two weeks. Through our self help groups, the sufferer is encouraged to assume a degree of responsibility for the management of their illness and to work co-operatively and collaboratively with the GP and other health professionals.

Self help groups are another resource to complement the health professionals – they will never replace them. Such a group, however, must be reliable and professional in its outlook and activities in order to gain respect. It is imperative one has a support structure in place as the network grows.

At Depression Alliance we advocate quality before quantity. There is little point in starting up a host of groups only to find 90% of them have disappeared within six months. Similarly one must beware of a group leader being over zealous at the outset and wishing to run a group twice a week for fifty-two weeks of the year. It is far better to start a group once a month and as interest and support grows the frequency of the meetings can be increased.

Generally speaking, groups can be of any size but in our view those having ten to twelve in number operate most effectively. The groups can either be mixed or of single interest and we now have one internet group in London. It is important than a group has a sense of direction together with an impetus and that is why we engage the services of speakers on a regular basis. We also encourage social outings to provide a degree of variety for group members.

From the group leader’s point of view one should always seek feedback from the group in order to ensure that it is meeting the needs of the members rather than possibly following the group leader’s personal agenda. One should always acknowledge that the group belongs to everyone and not just the leader. It is important to avoid repetition and to ensure that everyone participates in a group discussion as much or as little as they want to. As part of the educational process, each group in our organisation has access to a modest library of books, tapes and videos on various aspects pertaining to depression. At group meetings one must be aware of the dominant member who considers his or her views of greater importance than anyone else or possibly they simply like the sound of their own voice but really have nothing of interest to say.

I cannot stress enough that a self help group is not a panacea for all ills. There is no magic wand we can wave to provide a guaranteed cure. All too often people with depression come to us a last resort and as a consequence expect too much from the group. If expectations are wholly unrealistic then disappointment will invariably follow and this may well plunge the member into an even greater depression.

As our groups grow they either split into smaller groups located in more convenient geographical areas or after the opening address by the leader they can divide into special interest groups whether based upon age, sex or some other qualification.

There is no reason why after a group becomes firmly established it should not be self funding. This in turn creates additional responsibilities for the organisation as it must closely monitor group expenditure. There should be accountability at all times for charitable funds and we are now linking with health services and NHS trusts in the provision of services which in turn can become income generating. We are developing a more sophisticated education and training programme and I would see our self help group network going from strength to strength as we enter the next millennium.

I do not pretend for one minute that self help groups provide all the answers for sufferers from depression but they can provide an extremely useful and effective support mechanism in assisting the recovery of those with depression in combination with medication and talking treatments.

Communication held at Symposium “Role of Advocacy in psychiatric assistance” within the 3rd SOPSI Congress, Rome, March 1, 1998.

 Correspondence to: R. Elgie, Depression Alliance, 35 Westminster Road, London SE1 7JB – U.K.