The British Stammering Association

Public Awareness

The British Stammering Association was founded in 1978 as the Association for Stammerers. It currently has approx. 1,600 members, 1,200 of whom are people who stammer or parents of children who stammer, and the others are in the majority speech and language therapists. There is, by the way, no difference between ‘stammering’ and ‘stuttering’ beyond the linguistics: in the UK we tend to say stammering.

Our annual turn-over is approx. £250,000 and we employ 7 full-time staff members. I would like to stress at this point that all of the projects we run can only be implemented at the current scale because we have paid staff to do this. However, if you come from an organisation that has few members of staff or is run entirely by committed and enthusiastic volunteers, I hope you will still be able to pick ideas from this talk to take home with you. After all, that’s what ELSA is here for.

PUBLIC AWARENESS

Last year, the BSA adopted a new vision/mission statement. Our vision, our long-term goal, is ‘a world that understands stammering’. Our mission, our way of achieving this goal, is four-fold:

to initiate and support research into stammering
to identify and promote effective therapies
to support all whose lives are affected by stammering
to raise public awareness about stammering

It is this last statement we will be concerned with here.

Information and Counselling Service

BSA was started in 1978 as a self-help group by people who stammer who had attended an intensive therapy course. They were, and many who call us today still are, unaware that there are others in the same position they find themselves in. Unaware that there are various therapy options, unaware of specialist centres, unaware even that therapy was available to them free of charge under the National Health Service (NHS).

BSA’s first, and foremost, task was therefore to raise awareness amongst the affected population, to give information and advice to people who stammer and parents of stammering children.

We had a few very simple messages: you're not alone; there is help available; simplistic advice (take a deep breath) doesn't work.

Early on, BSA developed a series of advice leaflets which are made freely available to anyone who requested them. They are also sold to speech and language therapy departments, schools etc for further distribution at a very low price.

This service grew until, about 3 years ago, we had to deal with about 2,000 – 2,500 enquiries per year. It was then thought necessary to put it on a more professional footing by employing a qualified counsellor. Fortunately, we were able to secure a three-year grant from the National Lottery Charities Board which enabled us to do just that.

We also installed a separate telephone helpline with local rate access (to enable callers from all countries within the UK to access the service) and we have designed posters which will spread the message of the helpline’s existence. We never looked back since.

Again, having a paid member of staff made all the difference: three more leaflets have been developed in the last two years: a general information leaflet on the BSA, a leaflet for spouses and partners of people who stammer, and a leaflet outlining options in therapy available on the NHS.

In addition, we have been able to monitor the service more closely and identify additional needs. Plans for the future include, e.g., separate advice sessions on employment or educational matters. We are already utilising the skills of our schools liaison officer Cherry Hughes (a former Deputy Headmistress of a secondary school) to answer specific, school-related enquiries.

This service is at the core of our activities, what we exist to do. This is the ‘focus group’ where we identify demands and needs which will eventually inform new services to users. Our vision/mission statements are all influenced by this aspect of our work.

The Primary Healthcare Workers Project

When we ran the advice and information service with volunteers, we heard again and again from parents of school-age children looking for help. They had seen their doctor or health visitor when the child started to stammer at the age of two or three, but were invariably told to ‘ignore the stammer and it’ll go away’. Now, five or six years later, it had not gone away.

We looked at the training of healthcare professionals and were astonished to find that there was nothing in it that would enable them to make any statement on stammering, let alone one of such potentially damaging consequences.

This was the birth of our PHCW campaign: to educate primary healthcare workers, i.e. family doctors, health visitors, nurses etc, those who most often come into contact with small children who begin to stammer, that ‘ignore it, it’ll go away’ is not the right answer.

Again, the basic message was simple: early intervention works! Around this message we built an advice system for healthcare workers, based on a simple free referral guide which tells the GP/health visitor when they should refer a stammering child to their local NHS speech and language therapy service. In addition, we developed a leaflet for parents under five which the healthcare workers can hand out to parents who come into their practice and who are concerned about their child’s speech.

This project is run in close co-operation with local speech and language therapy departments. Our fieldworker has developed a training and implementation pack and has held local training sessions all over the UK to enable the speech and language therapists in turn to train their health visitors and family doctors about the importance of early intervention. The speech therapists have collected referral information before the project started and after they implemented the project in their area, and the fieldworker is currently in the final write-up stage of the project, analysing the differences between the two data sets. Early results show an increase of 37% in referral figures for under-fives – and the children get referred much sooner after onset.

Traning for therapists

In addition, several speech and language therapy departments all over the country voiced their concern that they would not be able to cope with an increased demand for early stammering intervention. This was not only due to the numbers of SLTs available, but also with their perceived lack of knowledge in treating children who stammer. They did not have the confidence to ‘go out there and do it’ but were ‘terrified when a mum with a stammering child comes through my door.’

We managed to persuade three eminent speech and language therapists to develop a three-day training programme for therapists, each in their own region (consisting of a two-day block and a follow-up day three months later); successful regional fundraising again allowed us to offer these training courses for free to cash-strapped speech and language therapy managers. These courses have been a tremendous success: we have just finished the follow-up day in the Highlands and Islands of Scotland where we were able to offer speech therapists free travel and accommodation from all over this very remote area to meet at Inverness for the course, from places as far afield as the Outer Hebrides and Orkney. Other courses were run in North West and South West England and in Wales What now seems to have happened is that they have taken on a momentum of their own and speech therapy departments are beginning to contact these trainers for further courses, unconnected with the BSA.

Translations

We also raised funds from the Department of Health to translate the parents leaflet into ethnic minority languages. In many Asian families, it is the grandparents looking after the child, without any knowledge of English or literacy in their native language. After consultation with the speech and language therapy profession we identified five languages (Urdu, Punjabi, Gujarati, Bengali and Somali) and produced spoken versions of the tapes in these languages. A written translation into Welsh, the only other official language in the UK, is also available.

There was one other special bonus connected with the PHCW: much of our work during the first three years had been supported by British Telecom. Their advertising agency came to us, asking whether we would be willing to take part in an advertising campaign, telling the world how wonderfully caring BT was. To tell you more about this, I have now great pleasure to hand you over to the star of the poster campaign, BSA trustee David Preece….

Parental Awareness Campaign

In many ways, the PAC is the natural successor to the PHCW described just now. While the PHCW was designed to carry the message of ‘Early Intervention Works’ to the healthcare professionals, the PAC will do the same with parents of small children. We have secured three-year funding from the Department of Health and a national charity for this project.

The PAC intends to focus information on parents so that it becomes ‘common knowledge’ that if a child under the age of three stammer professional help should be sought as soon a possible. We need to dispel the myth of ‘don’t worry – he’ll grow out of it.’

We will distribute posters to GP surgeries and health centres all over the country, as well as to ante- and post-natal clinics and classes.

We will also be targeting companies serving the market of early years retailing, e.g. Mothercare, Early Learning Centre, supermarkets and pharmacies. Young mothers in Britain receive a so-called ‘bounty pack’ with samples from commercial companies, but also information on early years development. Again, we would like to see information on speech and language development included in this.

Further publicity will be generated in the national and regional media, as well as the specialist press, in titles such as Nursery World, Mother & Baby, Parenting, Childminding etc. However, do not forget magazines for the older generations: we have found that an article in, e.g., a house magazine for an insurance company aimed at the over-50s elicited many more responses from concerned ‘nanas’ and ‘grandads’ than a parent magazine ever would.

Apart from parents we will be aiming information at those professionals who are coming into contact with the under-fives: nursery teachers/nurses, childminders, nannies, mother and toddler groups and playgroups.

The project will work towards including stammering in the syllabus for health visitor training and post-graduate training which GPs are required to attend. Our experience in teacher training by the Helping Stammering Pupils project will stand us in good stead in this area.

What are we trying to achieve?

There are currently in the UK 155,000 children under the age of five who stammer. About 30,000 of these are at risk of becoming chronic adult stammerers if they do not get help by a specialist as soon a possible. There are approx. 250,000 parents of children under five who stammer – the PAC will aim to at least match this number with the number of leaflets distributed.

The project will ensure that more dysfluent children are being referred as soon a possible after onset when therapy is most time- and cost-effective. Other important outcomes will be an increase in the spread of referral agents (current data shows that the majority of children are being referred by health visitors; most speech and language therapy departments however, work on a self-referral basis and every parent has the right to ring up and make an appointment for their child) and, over time, a decrease in school-age referrals.

The innovative aspect of this project is to reach parents and establish a common knowledge that not all children outgrow stammering, and should be referred to speech therapy as soon after onset as possible. The message of this project is upbeat: early intervention for children can help to prevent a minor impairment from becoming a major disability.

How are we going to go about this?

The project will employ a full-time project manager, and a part-time administrator. The first six months will be taken up by a scoping study, to research the best methods of disseminating this information to the different target groups (parents, primary healthcare workers, early years workers, nursery workers and early years retailers) and we will establish a distribution timetable for the next two years. 250,000 leaflets and 50,000 posters will be designed and produced for the project.

We will identify ten NHS Trusts in England to take part in a detailed analysis of the factors that influence parental referral patters, e.g. economic, social, cultural etc.

The project will be launched in the media during the Millennium celebrations in the year 2000. It is a very appealing message (preventive health) and a very appealing story (young children) and it is usually easy to find a local success story which can be placed.

The posters and leaflets will be distributed over a two-year period to GPs’ surgeries and health centres, nursery schools etc. During the project, demand for initial training will be identified in the different target groups: speech and language therapists, GPs, health visitors, school nurses and early years workers. At the end of the project, a report will be produced on the best means of including appropriate training modules in specific health and education training programmes.

We do expect to be able to receive funding for a fourth year of the project, the evaluation and dissemination period. The evaluation will take part in the ten identified NHS trusts and will take into account: methods of information/ distribution, pre- and post-referral referral rates, quality of service provision, as well as social, economic, ethnic and geographic nature of the local parent population. This analysis, it is hoped, will highlight factors affecting increased parental awareness of early referral, therefore leading in the future to the delivery of more time- and cost-effective treatment throughout the United Kingdom.

Norbert Lieckfeldt
March 1999