Maintaining a Telephone Support Line and Producing a Regular Newsletter
Presentations at the 1st World Conference IASO - Tampere, Finland, 4-8 July, 2000
Presented by: Sally Walburn - ASSERT
My name is Sally Walburn and I am the chairperson of ASSERT, one of two groups in the United Kingdom. I have a son, Matthew who has Angelman Syndrome; he is 9 years old.
Who Are We?
Well, ASSERT stands for the Angelman Syndrome Support, Education and Research Trust, which was set up by a group of parents and registered as a charity in January 1993.
As explained I am the current chairperson and have been involved as a trustee of ASSERT for the last four years. Part of my role involves taking a turn on the Telephone Support Line and writing and compiling the newsletter, which are two of the ways that ASSERT supports families. We provide support to any member of a family who has a relative with Angelman Syndrome.
What Kind Of Support Do We Offer?
This is just an overview to give you an idea of what ASSERT does. It helps to know that ASSERT has no paid workers and all our funds come from fund-raising and donations.
First of all telephone support. The support line which I will talk about in more detail later, is open 24 hours a day, 7 days a week.
The Newsletter: This is produced quarterly and every member of ASSERT, including professionals and families receive a copy free of charge.
Regional Meetings: These are held during the year and are organised by families. This gives everyone an opportunity to get together and chat informally over lunch and then in the afternoon time to catch up on ASSERT activities, plus listen to a speaker who will talk about subjects such as speech and language, communication, wills and trusts, dental treatment etc. The topics are all very varied but related to Angelman syndrome.
We produce a range of information sheets and have also recently developed a tri-fold leaflet, this talks about Angelman syndrome in a succinct way, and it can be given out to parents, professionals, and anyone involved with Angelman syndrome. The idea is to eliminate the constant repetition about the syndrome, particularly in the early days. This has just been sent out to our families with the last newsletter.
Website: This is almost up and running now and is on the Web but in prototype, as with all other Angelman syndrome websites, we will be linking in to all our friends around the world.
Contact Register: When families agree to be on our mailing list they also indicate whether they would like other families to contact them either to visit or just for a social call. We therefore produce a register each year with the contact details. This is for families only and not given to professionals. This contact register goes out with the ASSERT Report at the beginning of the year.
Conferences: This year we will be holding our first national conference in September from the 8th - 10th in Loughborough Leicestershire. If anyone is interested in joining with us or would like to present at the conference, please let me know.I hope you don' t mind me using this opportunity to 'advertise'!
Maintaining A Telephone Support Line
The telephone support line gives us an opportunity to support families going through situations, which arise during life with Angelman Syndrome.
Often the initial and sometimes only contact is around the time of pre and post diagnosis. As we all know this is a particularly difficult time for us all and speaking to someone who 'knows' exactly how you feel is extremely beneficial. We find that parents can ask questions and address issues, which they don't feel they can with a professional. Often parents can't take in all the information at once and feel embarrassed to go back and ask questions, which they may feel, are insignificant. With the support line they can ask anything they like and hopefully we can help them and offer re-assurance.
- There are calls around Education issues: schooling and individual education programmes, therapies and communication.
- Epilepsy and the drugs used, or problems with periods of fitting.
- Respite care.
- Benefits.
- General support and information.
It is important therefore that the trustees on call are knowledgeable about such issues, and some of us are pro-actively involved with these issues in our local areas. This helps us pick up the information that we need to support families.
The Convenience Of The Telephone Support Line
The calls to the support line are returned immediately so that there is no cost to families and when some calls can last up to three hours, this is helpful to families who can chat without having to worry about their 'phone - bill. ASSERT did look into the cost of a free 'phone number but the way we return the calls is more cost - effective for the charity.
All calls are logged this means that we can keep up to date with our families as a copy is kept on file. This also means that if a parent has been in touch about an issue we can refer back to their last call, check the advice or help given plus if there is any action that needs to be taken this is followed up and dealt with quickly.
We also run a separate professional support line and any information requested is dealt with and sent out promptly by our administrator, Jim Brennan.
How Do We Maintain A 24 Hour - 7 Day Telephone Support Line?
This is quite a bold statement that we make, but it's true. However, in reality we get calls during the day and evenings, and I am pleased to say that we have never had a call in the middle of the night! Please, don't even think about testing us out!
We maintain this service by having a regular rota, which is manned by some of the trustees of ASSERT who are all parents. We all have varying 'expertise', but we all 'know' what it's like to have a son or daughter with Angelman Syndrome. Sometimes we can't always answer parents queries but we always try to put them in touch with another trustee, professional or organisation who can help them.
During the day we have an answer-phone which takes calls from the main ASSERT family support line number. These reach Elaine Sears (our treasurer) and she deals with them herself or refers them to the trustee 'on call' that evening. All calls are returned within 24 hours, but usually much sooner than this. We do ask parents to help us by leaving a suitable contact time, which means that for example if a child is in hospital we can talk to them when they are at home for a short while and hopefully not keep missing them.
The cost is borne by the charity, although some parents are happy to pay for the call and see it as a donation. In the past we have had donations such as one from Polygram International to be used specifically for the support line, this has really helped us out.
The number of calls varies although we have noticed a rise in the last few months. There was a newspaper article, which appeared in a local paper, and this generated 10 calls in a day, however, we would usually get on average a call a day from a professional twice a week and four or five a week from families. This means that it is so important that we take it in turns as one person dealing with this many plus acting on these calls, i.e. follow ups and sending out information, can get bogged down, it is so important to share this task to provide a good service.
As I said before, calls vary from a few minutes to several hours, another reason why we need a rota because we all need a break. Particularly if we have had a difficult, emotional call. I must admit, I have to try hard not to cry sometimes when I get emotional calls. It's at times like that we could do with being able to rush round and chat over a cup of coffee, which is the only disadvantage of the support line.
I hope this has given you an insight into what we do on the support line and the service that we offer. I have to say, we don't have the perfect answer for dealing with support calls and you never know what type of call you are going to get from one day to the next, but I have to say the ethos of ASSERT is very much around positive but realistic conversation and all calls are treated sensitively and confidentially.
Producing a Regular Newsletter
The ASSERT Report is a great way of keeping in touch and for families who don't use the support line it is often the only form of contact we have. In 1998 we sent out a questionnaire to ascertain impressions of ASSERT and what we do, a couple of comments came back about the Report.
"We look forward to receiving the Report with anticipation" and "I really look forward to reading it".
I am very proud of the newsletter we produce and it is an honour to share this with you today. Newsletters are quarterly, although we have had some hiccups where this has been delayed due to school holidays and hold ups with printing, but one of my aims when I took over the responsibility for the newsletter was to make it more regular. People do look forward to it, as the comments I read out clearly demonstrate.
The articles for the newsletter come from a variety of places. The main one being from parents who can appeal for information or more often than not tell us stories of their lives based around experiences of holidays, school or boyscouts or just their 'story'. The photographs are very important and add life to the stories, we can put a face to a name.we all love to see the children and young people with AS. Everyone likes reading these articles but up until recently it has been hard getting contributions from families. I guess we are all so busy and it's hard to sit down and find a free spot in our day to relay a story. However, for the sake of all those others who are writing the newsletters like me. please do send in your stories, they are a great source of information and comfort.
The Support line often generates information or requests - sometimes we don't always have the answer so we can make an appeal in the newsletter. The only drawback of this is that if we've just missed the printing deadline, then it's three months before we can print again. I have to say that it's quite frustrating when we do print an appeal and no one let's us know what their experience was, especially if it's a problem we know that some families experience, for example, biting and pulling hair.
Professionals sometimes submit the latest information on research that they have done. We are pleased to see those contributors here in Finland, they all know who they are. I have to say, we really appreciate your input. Without you, we don't learn what's happening in the scientific or research world of Angelman syndrome.
I gather information from other newsletters, reports, local information, or articles that I have read. Sometimes having to seek permission to print if the material is copyrighted. Advertisements in other papers may also be of interest to families, particularly about holidays and equipment.
The Internet and Angelman Listserv
The Internet and Angelman Listserv is also a great way of getting information, and the listserv particularly for those sayings and poems.you may have seen the "Welcome to Holland" and "I'm home", in the last Report. I have requested to copy emails too, for example I emailed Fred Windbeck about his talk at the Philadelphia Conference, and was able to print that in the October edition of the Report. It would be great if we could all exchange international / common information in this way.
Fund Raising
Fund-raising - It's always important to promote fund-raising. Although we do keep it low key so that families don't feel pressurised. We are supported quite well, but with the conference coming up our funds will be somewhat depleted, so we will have to promote ideas in the next few issues. We already collect used stamps and aluminium cans, this generates a small income.
Regular Information
We do have regular information such as contact numbers, addresses and a donations list. There was a lot of repeated information, which took up half the newsletter when I took over. I have cut this considerably, as much was ignored and it was a waste of print.
Printing
We are very fortunate at ASSERT to have Jackie and Aleks Klimanski who are related to the Barton's, who are here from Germany. Jackie's father 'Dick' is an ASSERT trustee. They design and print the ASSERT Report free of charge which is an enormous saving for us and a huge donation from them and we do thank them very much for their help and support.
I type up all the information and articles, but Jackie makes it what it is. She sends me a proof copy, which I correct and sometimes add to if we've had a last minute request. After three weeks or so of us 'talking' and then waiting for Aleks to print the Report it goes to Dick and his wife Dorothea Barton who stuff all the envelopes and make sure it's posted. We send out over 400 copies and they go not just to the UK but all over the world.
Some Comments On The Newsletter
Finally, I would like to share some comments with you from the questionnaire which was sent out with the July Report in 1998, which I mentioned earlier.funnily enough we had one person who didn't comment on the report because they said they didn't receive it!! The comments are as follows:
It's a "Good mixture of articles, something for everyone, personal stories & education/research reports & useful addresses etc., excellent".
"I believe its greatest asset is that it does just what it is aimed to do - give support & importantly - hope - to parents and families" and "It's friendly & cheerful".
I hope this has given you all an idea of what can be done with the right help and support. It's all about teamwork. My fellow trustees and myself (in ASSERT) certainly make a good team. If you have any questions on what I have said today or about any aspect of ASSERT please feel free to ask me and I hope I can answer them.
Thank you for listening.
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