UK Self Help Group

UK SELF-HELP GROUPS - AN INVALUABLE RESOURCE

The many thousands of UK self-help groups and support organisations have been recognised for many years by the British Medical Journal as being "an invaluable resource". But do we really know what a self-help group is? How are they run? What do they do? Do we as a society truly appreciate or make full use of them?

What is a self-help group?
A self-help group consists of people who have direct experience of a particular condition or life situation. They may have experienced this directly or it may be the experience of a parent, family member, carer or professional care worker. This empathy and sharing of experience enables people to give each other a unique quality of mutual support and to share practical information and ways of coping with that condition or situation.

How are self-help groups run?
Almost all self-help groups are run by and for their members. Some are professionally organised and facilitated. Groups may vary in how they operate. Some have a committee and plan a calendar of events and speakers, while others are very informal. Membership numbers can vary from a handful of people right up to the scale of Alcoholics Anonymous (AA), which is perhaps the best-known example of a self-help group. It is also one of the most widespread with approximately 2 million members in 150 countries. AA is famous for its 12-step model and this has been adopted by other groups such as Narcotics Anonymous, Cocaine Anonymous, Overeaters Anonymous and Sexaholics Anonymous.

The 12-step model is only one of many used by self-help groups, and some groups do not operate according to a model at all, but simply provide an unstructured, safe space for the discussion of personal problems. Most groups hold regular meetings, at least annually, but some are quarterly, monthly and, at a local level, weekly. There is regular phone contact and most have newsletters and information packs for new members.

More recently almost every group has developed a website, often with a discussion forum and e-mails. This latter development is important in that it allows access to the groups for people who might otherwise be denied it, either though shyness or embarrassment, physical disability or geographical location. Web-based groups are proliferating, notably so in the last year. Web-based groups will never replace the traditional group but, properly developed, will provide a valuable adjunct. Almost all groups have local contacts spread throughout the UK.

What are the aims of self-help groups?
The differences between the many different self-help groups are not limited to a model or philosophy of activity, or to the topic to which the group is dedicated (eg alcoholism, obesity, cancer, bereavement). Self-help groups also differ in their goals and purpose. Obviously, almost all self-help groups have the primary aim of providing a safe and supportive environment for their members. Some groups have additional, and sometimes wider, aims. A self-help group can be a source of information about treatment for a certain condition, legislation, research or other relevant issues that might be useful to the members. Some groups (eg helplines for women and men who have been abused) provide a safe refuge and offer legal advice and support for court hearings.

Almost all self-help groups are engaged, perhaps almost unconsciously, in a form of political activism aimed at changing the attitudes of society on certain issues, increasing awareness and tolerance, and removing physical, social and psychological barriers. Some groups have very definite aims. For example, they may seek to improve access for the very many different types of disabled persons, to provide a voice for the elderly, to reduce the road death and injury toll or to highlight the potential dangers of noise, radiation and electromagnetism, etc. What is significant is the move in the last decade from political pressure groups led and organised by the able-bodied to groups led and organised by those who are actually disabled. A possible explanation for this is that only disabled people can know what their true needs are and they are motivated enough (and for the right reasons) to make this effort. By acting for themselves, disabled people can become empowered and at the same time prove their abilities.

What benefits do the groups provide?
The first and most obvious benefit is to the individual. Many studies - mostly American, but equally applicable to the UK - agree that participation in a self-help group can be useful, up to a point, in supplying emotional support. Moreover, the group can often supplant more traditional support networks such as the family. When they first contact a group many people admit to a feeling of tremendous relief: "I thought I was the only one in the world to feel this way or to be in this situation."

People can benefit from participation in a self-help group in many different ways. Some of the most common benefits are:

Reduced feelings of isolation and loneliness
Being able to access relevant information and literature
Having the opportunity to share experiences
Being empowered to take an active role in their own health and well-being
An increase in self-esteem
An increase in self-confidence
Having the opportunity to develop new skills
A greatly increased social circle
The opportunity to give as well as receive help
Reduced feeling of stress, anxiety and fear
Opportunities to talk to people who have 'been there'
Swapping and learning new and practical ways of dealing with problems
Feeling more in control
Being inspired and gaining support from others' experiences
Receiving sympathy based on empathy.

By providing all of these benefits to the individuals, and by improving in practical ways their physical situation and, at least as importantly, their mental outlook, the self-help groups are directly and indirectly helping the families of those affected. Self-help groups are a tremendous, though sadly still very much underused, source of support for the many thousands of largely unpaid carers throughout the country. There are self-help groups for carers but their total membership does not reflect anywhere near the number of people who are carers. Many carers will be unaware of the support that they can receive. Perhaps they do not even recognise themselves as carers.

If we accept that the family is 'the building block of society', it follows that self-help groups have a tremendous contribution to make towards it. Perhaps this contribution goes beyond just the support that they provide to their members. The organisers of thousands of groups set a tremendous, inspiring example with their selfless, unstinting and unpaid hard work.

Self-help groups exist as a freely available resource to the health and social services. Thousands of groups, representing an untold number of members with first-hand experience of a bewildering number of conditions, are able to collect and collate data, provide practical support, advice, information and empathy. Does every carer, sufferer, teacher, lay worker, human-resources manager, school nurse, health-page editor, health and social-care professional know where to find this support? Sadly the answer is all too often 'no'. I would hope that times have moved on since the day my own GP said to me, "You have tinnitus. There is no cure - you will have to learn to live with it." From correspondence we have received, it would appear that this is not the case. This is no reflection on our GPs, more so on the pressure they are under. There is almost certainly a failure of those responsible for the health and social services to recognise the value of these groups. If one compares what these groups achieve using unpaid volunteers, fundraising, sponsorship and, if they are lucky, the one-off lottery or local authority grant with the budget for health and social services, then the failure to publicise and use self-help groups effectively seems a terrible waste.

Soon after we published the first UK Self-help Groups and Support Organisations Directory (www.ukselfhelp.info) we received a number of comments from various healthcare professionals. Our favourite began: "Imagine … if all the health and social-care professionals in this country had easy access to the experience and information of all the UK self-help groups and support organisations …" Over the last ten years, this comment has inspired us in our efforts to expand and update the Directory and, more recently, to make it available via the Internet.

Supplied by courtesy of Steve and Julie Garrill, Compilers of the UK Self-help Group and Support Organisations Directory