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UK Self Help Groups - An Invaluable Resource Invaluable and Undervalued? 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 they are run? What 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. This experience may be their own or as 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, others are very informal. Membership numbers can vary from a handful of people right up to Alcoholics Anonymous (AA) which is perhaps the best known example of a self-help group, as well as one of most widespread with approximately two million members in 150 countries. Alcoholics Anonymous is famous for its twelve step model and this has been adopted by other groups such as Narcotics Anonymous, Cocaine Anonymous, Overeaters Anonymous and Sexaholics Anonymous. The twelve step model is only one of many used by self-help groups, and some groups do not operate according to a model, but simply provide an unstructured safe space for the discussion of personal problems. Most groups hold regular meetings, at least annually, some 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, either though shyness or embarrassment, physical disability or geographical location. Web-based groups are proliferating, noticeable even 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 United Kingdom. What are the aims of self help groups? The difference between the many different self-help groups is 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 to their members. Some groups have additional, sometimes wider aims. A self-help group can be a source of information about treatment for a certain condition, legislation, research and other relevant issues that might be useful to the members. Some groups (e.g. helplines for women and men who have been abused), provide a safe refuge and legal advice and support for court hearings. Almost all self-help groups are, perhaps almost unconsciously, engaged in a form of political activism aimed to change the attitudes of society on certain issues, to increase awareness and tolerance and remove physical, social and psychological barriers. Some groups have very definite aims, 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, to highlight the potential dangers of noise, radiation, 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 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 provided is that to the individual. Many studies, mostly American, but certainly applicable to the UK, agree that participation in a self-help group is useful, at least to a certain extent, in supplying emotional support and that it often comes to replace traditional support networks such as the family. When they first contact a group many people describe feeling a tremendous sense of relief: "I thought I was the only one in the world to feel this way or to be in this situation." People benefit from participation in a self help group in many different ways. Some of the most common benefits are:
By providing all of these benefits to the individuals, by improving in practical ways their physical situation and, at least as importantly, their mental outlook, the self help groups both directly and indirectly are helping the families of those affected. Self help groups are a tremendous, though sadly still very much under utilised, 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 anywhere near reflect the number of people who are carers. Many carers will be unaware of the support which they can receive, perhaps they do not even recognise themselves as carers. It follows that if we accept that the family is the ‘building block of society’ then self help groups have a tremendous contribution to make towards society. Perhaps this contribution goes beyond just the support which they provide to their members. What a tremendous, inspiring example the organisers of the thousands of groups set with their selfless, unstinting, unpaid hard-work. Self help groups are a resource the health and social services already have freely available to them. Thousands of groups, representing an uncounted number of members with first hand experience of a bewildering number of conditions, able to collect and collate data, provide practical support, advice, information and empathy. Does every carer, sufferer, teacher, lay worker, human resource 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 from when 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 not. This is no reflection on our GPs, more so the pressure they are under. There is almost certainly a failure of those responsible for the health service and social services to recognise the value of these groups. If one compares the budget for health and social services with what these groups achieve using unpaid volunteers, fundraising, sponsorship and, if they are lucky, the one-off lottery or local authority grant then the failure to publicise and utilise self help groups effectively seems to be a terrible waste. Soon after we published the first directory of UK Self Help Groups and Support Organisations we received a number of comments from various health care 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 …" This became our inspiration to continue for the last 10 years to update, expand and update the directory and, more recently, to put it onto the internet. Steve & Julie Garrill compile the UK Self Help Group and Support Organisations Directory, and have built and maintain the www.ukselfhelp.info website.
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