October 2003

Introduction

This paper proposes that the British Stammering Association establish a Scottish Branch with its own Steering Committee, eventually to be superseded by an Executive Committee. In its present form, the paper includes background information about the British Stammering Association (BSA); suggests the terms of reference of the Scottish Branch (BSA Scotland) and its relationships to the central office; outlines the Branch's way of working; identifies the resources needed by the Branch for its effective operations and sustainability; and makes proposals which will form the basis of applications to funding agencies. At this stage, the paper will be of general interest to the Board of BSA, potential committee members of the Scottish Branch; professionals in the field; those who stammer, and their relatives; potential funders; and any others with an interest in this work. It is assumed that in due course the paper will be edited for the particular purposes that it may serve - for example, open days, consultations of various kinds, the formulation of development plans and applications for funds.

The background

Established as a charity in 1978 (charity number: 1089967) and as a company limited by guarantee in 2002, the British Stammering Association has sought to support children, young people and adults who stammer, their families and the professionals in this field. It operates an information and support service, a website, a postal library, a directory of self-help and therapy groups, and several telephone support groups. It produces a quarterly magazine and holds an annual conference that is attended not only by people who stammer but also by professionals. BSA has run projects with specific aims, such as raising awareness of childhood stammering; supporting school age children; and addressing employment issues for adults who stammer. It is the only organisation in the United Kingdom offering free support services of this kind. More detailed information about the work of BSA may be found in its latest Annual Report, available on request from the BSA office or on the BSA website www.stammering.org

The vision of the BSA is stated as follows:

'A World that Understands Stammering'

The four stated missions of the organisation are:

to raise awareness of stammering
to offer support to all whose lives are affected by stammering
to identify and promote effective therapies
to support research into stammering.

The values of the BSA are founded on the principles of empowerment, development, integrity, openness, quality and caring for people. Its activities and services are intended to be supportive and complementary to the professional services available through Primary Care Trusts and other sources. Indeed, in the diversity of its services it is able to go far beyond the scope of provision through the health services.

The business of the BSA is managed by a Board of nine Trustees, plus co-opted members. Permanent staff include the Chief Executive, Mr. Norbert Lieckfeldt, a full-time Administrative Secretary and a part-time Membership Services Officer. Other staff are recruited for limited periods and for specific purposes, such as the 'Parental Awareness Campaign' (1999 - 2002). The central office is situated in London. Apart from Jan Anderson, the Scottish Co-ordinator, there are no decentralized offices elsewhere in the United Kingdom.

The context

In early 2003, the Scottish executive published its White Paper 'Partnership for care'. Its themes are (a) the integration of primary, secondary and tertiary care, (b) a closer partnership between everyone concerned with health, including the voluntary sector, (c) an extension of 'health promotion' to include the contributions of many non-medical agencies and voluntary organizations. The aim is a truly 'patient-centred' service, meeting changing expectations and encouraging personal responsibility. Thus the White Paper seeks to develop 'pathways of care' from the patient's perspective, including one-stop clinics, the loosening of professional boundaries, a shift from acute to primary care, the creation of specialist centres and improved information to the public; 'public partnership forums' will engage in dialogue with local communities, and NHS Boards will devolve more resources and decision-making to front-line staff. These initiatives will be underpinned by objectives and policies specific to Scotland, reflecting, perhaps, the differing routes that the health services are following in England and Scotland. As a result, speech and language therapy services north of the border will be working in an environment which is not only progressively more particular to Scotland but also more closely related to the local communities where they are delivered. Similarly, the 'Partnership for a Better Scotland' document promotes equality, inclusion and diversity in all sectors of education with specific emphasis on a national strategy for services for children with special educational needs. It is suggested that the British Stammering Association should take cognizance of these trends by accepting a limited degree of devolution of its activities within Scotland. It is the purpose of this paper to set out a framework for this development.

The Proposal

It is proposed that a Scottish Branch of the BSA (BSA Scotland), be established in early 2004. The terms of reference and modus operandi of the Branch may be summarised as follows:

The work of the Scottish Branch will be managed initially by a Steering Committee, and eventually by an Executive Committee, of up to twelve voting members, with a quorum of five. The Committee will be able to extend its membership by co-option and to invite others to attend as non-voting 'assessors'. The Scottish Branch will subscribe wholly to the objects, policies and values of BSA, although it will be free to devise ways of meeting those objectives appropriate to the Scottish context. It is expected that at least half the members of the Steering Committee will be people who are, or have been, personally affected by stammering.

The Steering Committee will operate under the guidelines set for GC sub-committees. At least two BSA trustees will be members of the Steering Committee. The Chair of the BSA Board and the Chief Executive will be ex-officio members of the Steering Committee.

The Steering Committee will operate within the financial and policy framework agreed with the BSA Board and will be regularly reviewed. Regular reports will be submitted to the BSA Board on the operational and financial activities of the Scottish Branch.

The remit of the Steering Committee will be to set up and direct the operations of the Scottish Branch. In consultation with BSA, it will have powers to establish co-operative arrangements with other bodies; to print and publish material; to obtain money through fund-raising and other contributions. The Scottish Branch will conform to BSA's membership scheme which will remain UK-wide. For the time being at least, the BSA Board will be responsible for approving major new developments recommended by the Scottish Branch; for the establishment of formal partnerships with other bodies; for issues relating to property and assets; and, in conjunction with the Scottish Branch, for promoting changes in the law or in the policies of central government or of the Scottish Parliament.

The Scottish Branch will determine its own ways of working, including the appointment of office-bearers, processes of election and rotation of members, frequency of meetings, the creation of sub-committees, the delegation of responsibility for decision-making and expenditure to the Chair or to staff etc. It will hold Annual General Meetings. Staff will be appointed by a panel that will include one or more representatives of BSA and the Scottish Branch.

In broad terms, the funding strategy of the Scottish Branch will be devised and executed jointly by the staff of BSA and the Branch within the policy framework approved by the BSA Board. BSA Scotland, in consultation with BSA, will have powers to obtain money through fund-raising and other contributions. All funds raised will be used to benefit BSA Scotland and will be accounted for separately within the overall BSA accounts.

By the end of its first full year of operation, it is expected that the Scottish Branch will have become financially self-sustaining. This is necessary in view of the limited unrestricted funds available to the national organisation.

The financial implications of the proposal

These may be summarized as follows:

Recurring revenue expenditure:
Salary of the Scottish Development Manager (three days per week)
Office costs
Telephone, postage, stationery, internet access
Scottish Helpline and telephone support costs
Travel expenses
Expenses of Committee members, volunteers and others
Open days

Capital 'set-up' costs:
Computer and telephone equipment
Printing, leaflets and posters, material for consultation

Occasional expenditure:
Meetings and other consultative processes, publicity
Costs of recruiting staff and/or volunteers
Sponsorship of research
Projects for particular purposes
'Start-up' support to local self-help groups

The immediate funding requirements relate to start-up costs, recurring costs and other occasional expenditure in its first three years from 2004 to 2007. During that period, the Scottish Branch will benefit from the facilities afforded to it by the central office of BSA in London, for example certain forms of publicity, training etc common to the United Kingdom as a whole. During those first three years, the Scottish Branch will establish its own fund-raising strategy to ensure that as far as possible it will be self-sustaining.

The need for the service

About 5% of pre-school children show signs of stammering while learning to talk. Of these, about a third will not simply 'grow out of it'. Research shows that early intervention is highly effective in preventing persistent or chronic stammering in those children most at risk. Hence BSA is working to promote early referral and to support best practice in speech and language therapy. Stammering in adolescence and adulthood affects about 1% of the population and impacts on education, relationships and career choices. Significantly higher anxiety levels have been demonstrated in people who stammer than in people who do not stammer (Craig, 1990, Menzies et al, 1999). Many people who stammer try to conceal their difficulties and thus hold back from pursuing their personal aspirations. One of the greatest difficulties for people who stammer is feeling isolated. The BSA is the only national organisation that addresses this through bringing stammering people together as a community, sharing information on effective therapies and campaigning for greater understanding and acceptance of stammering in the wider world.

The BSA Board and Chief Executive have acknowledged that, following the establishment of the Scottish Executive, the organisation must strengthen its activities in Scotland. Two years ago, Jan Anderson was recruited to raise awareness of early stammering in Scotland as part of a national campaign. Her experience and her growing networks within the stammering and professional communities in Scotland have demonstrated the intense need for the extension of BSA's services north of the border, especially since isolation is exacerbated by the low population density of many areas of Scotland. The estimated 50,000 stammering people in Scotland represent a sizeable minority who merit support and a voice in making their needs known. The proposal has received strong support from speech and language therapists and other professionals as well as from people who stammer and their families.

An analysis of approximately 7,500 enquiries to the BSA Information Service has shown that only 4.5% of enquiries came from Scotland, hence the 8.5% of the UK population resident north of the border are substantially under represented in our caller profile. It seems clear that a London-based service does not meet the needs of callers from Scotland.

The benefits of the service

Over the last 25 years, the BSA has had a significant impact on the lives of many thousands of people who stammer. The BSA is the only association in the UK run by people who stammer for people who stammer. While we have excellent relations with the speech and language therapy profession, the great majority of our Trustees are people who stammer themselves.

The BSA is the largest membership organisation for stammering worldwide. Our 1,600 members raised approximately £45,000 last year, through subscriptions and donations.

Our efforts to promote early intervention (through the Primary Healthcare Workers Project 1995-99 and Parental Awareness Campaign 1999-2002) have been approved and financed by the Department of Health in England and the Scottish Executive. The Parental Awareness Campaign in Scotland led to an average increase of a staggering 87% in pre-school age referrals for stammering in its target areas.

During the Primary Healthcare Worker's Project we provided training in the management of early stammering for hundreds of generalist speech and language therapists where the need to update skills and increase confidence was identified. Two of these well-received courses were held in Scotland: one for Central Scotland was held in Angus and one for the Highland and Islands was held in Inverness. During the Parental Awareness Campaign a specialist 'Lidcombe Programme' course was held in Glasgow. A subsequent Lidcombe course for representatives of every Scottish Trust was held in Glasgow earlier this year.

Our education projects have trained well over 2,000 teachers in how best to support a stammering pupil in class. We have found through feedback from these courses that well over 90% of teachers have not received any training in the communication needs of their pupils. The BSA is currently producing training CD ROMs for all primary and secondary schools in England to ensure that all school staff have up to date information on how to support stammering pupils. We are aiming to produce equivalent materials for all schools in Scotland as well.

Our Information and Support Service deals with approximately 3,000 enquiries each year. Evaluative feedback from these enquiries is very positive (to be quantified). Each enquirer receives a personalised information pack. Our website www.stammering.org has become the definite web-based resource for unbiased information on all aspects of stammering, with its pages accessed hundreds of thousands of times each year.

The BSA is committed to supporting research in stammering. We are fortunate that our Research Sub-Committee can draw on the services of the foremost researchers and practitioners in the field of stammering in the UK. This year, for the first time, the BSA has offered student bursaries for short summer break research projects. One of the four successful students is from Queen Margaret University College in Edinburgh.

Consultation and evaluation

The Scottish Branch of BSA will be committed to doing everything in its power to promote the well-being of the people whom it serves. It recognizes that this can be achieved only through processes of continuous consultation with people who stammer, their families, professionals in the field, contingent organisations and other 'stakeholders', in order to engage their active participation in the affairs of the Branch. It recognises also that a well-informed population is essential to achieving this aim. Participation will also be encouraged if the Board adopt policies of delegation - that is, encouraging the establishment of local self-help groups and enabling people to help themselves - rather than policies of centralisation.

The approaches which the Board will take to consultation and evaluation are summarized below. All will aim to ensure high quality of practice and relevance to present needs.

The use of newsletters, posters, local newspapers, radio and other media.
Well-publicized means whereby any member of the public may identify concerns or propose ways in which the work of the Branch may be improved.
Accessibility of staff and Committee members.
Complaints procedures.
The creation of a web site.
Ad hoc public or semi-public meetings on specific issues.
The establishment and maintenance of a Cross-Party Group in the Scottish Parliament.
Outreach programmes to ensure that the activities and aims of BSA and the Scottish Branch are widely known and understood, and that participation in them is encouraged.
Feedback in general terms from people who stammer and their families, professionals and contingent organisations.
Systems to ensure that self-help groups are kept informed of progress on the issues raised during consultations.
Broadening the operational base of the organisation through the enrolment of volunteers.
An open network with statutory and non-statutory organisations.
The maintenance of good connections with actual and potential funders.
Means whereby the outcomes of consultation are brought together by the Branch in its evaluation of its work.
Resources permitting, an invitation to a wholly independent party to evaluate the work of the Scottish Branch.
Seminars from time to time, partly for training purposes and partly to review the work overall.
The nomination of a Committee member to undertake day-to-day supervision and support of the Scottish Development Manager.
A system of staff appraisal which will include self-evaluation.

About BSA Scotland