During the summer of 1994 a Survey was held and as a result of that survey it was decided last October, to hold a Round Table Discussion, in an effort to find out what impact we were having on the members in general and to find out how we could improve our performance and
encourage more members to take an active part. A discussion meeting was announced, to which all members were asked to contribute.
The Round Table Discussion, as advertised by the Irish Lupus Support Group, took place on
Saturday 22nd October 1994. It was attended by approximately forty members, which was
slightly disappointing but in fact proved to be an adequate number and ensured lively debate and discussion on most subjects and also enabled everyone who so wanted, to speak. This number enabled small groups to interchange together, but nevertheless have contact with the whole group.
Most people came from Dublin, but there were some from Cork, Galway Birr, Cahir and
Kilmallock. There were a few younger people there and they and their families made a very
meaningful contribution. We had hoped to attract some of the younger people and were glad that we were successful. All those who attended appreciated the opportunity to voice their opinions.
Members sat in groups of approximately six per table and all the subjects on the agenda were
discussed by all groups simultaneously. At the end of each subject discussed, all tables voiced
their conclusions and these were taken down on a Flip Chart which could be read by everyone.
There was much lively discussion, the main points coming out being that members are on the
whole very satisfied with the Group and how it is run, but more people would like to be
involved, particularly from the regions and the younger people.
The following is a synopsis of the points raised and copied to the Flip Chart and this report must be considered really as a spring board to initiate discussion, to encourage written suggestions, corrections and any views which it is felt may have been omitted or need further clarification and to highlight areas which could with benefit be expanded for the next Round Table.
It was agreed that we are a voluntary support group and should be run by the members for the
members and therefore it is essential that as many as possible be involved, no matter how small
that involvement is.
The layout of the contents of this Report follows the same sequence of the subjects as they were discussed on the day at the Round Table. Unfortunately, we did not have the time to deal with the subject of Communications at the Round Table, but it has been covered among the other subjects. In fact many of the subjects overlapped one with the other.
One of the main benefits from the Round Table, was to show us how such an exercise should be run. Some small mistakes were made, though these were few in number and we will doubtless be more polished for the second one.
The statements have been kept as closely as possible to the statements in the Flip Chart.
However, it was impossible to keep to the same sequence of points. In addition to the flip chart, some comments and explanations given verbally during and after the proceedings have been included.
General:
The views expressed in the area of Education and Awareness are grouped into four areas, as follows: Public Bodies, Doctors, Family and Sufferers the last three are those highlighted in the Survey.
Public Bodies:
In the general area of Public Interest suggestions were made as follows:
(a) Lobby of Members of Parliament and Public Representatives:
(i) It was explained that annually, a lobby is made to the Minister of Health by
Members of the Committee. The major lobby is for the inclusion of Lupus in the long term illness scheme. This lobby has not succeeded to date. The view was expressed that research should be undertaken to provide relevant information to improve the presentation of the Lobby, i.e. the total number of likely applicants and the cost involved in the provision of funds. Advice should be sought at a professional level for this purpose.
(ii) Directions should be prepared by the Committee or a Sub-Committee to enable
every Member to lobby Members of Parliament on the key issues at the doorstep in anticipation of an election nationally or an unexpected by-election.
(iii) Members should always be ready with a prepared Lobby when any opportunity
may arise to speak to a Member of Parliament from their own constituency.
(b) Use of National and Local Newspapers and Magazines:
(i) Many people at the Round Table expressed the view that local Groups and
Members would have greater opportunity to gain publicity to make people aware of Lupus through local newspapers and advertisements.
(c) Use of National Broadcasting Media:
(i) People said we should continue to pursue opportunities to gain access to
television and radio programmes. Again, Local Radio afforded the best
opportunities with local Members and local Support Groups.
(ii) While most people applauded the achievement of getting Lupus aired on
television, there was some adverse comment directed at the Check-Up
programme which was recently broadcast. The comments made were as
follows:-
* There was insufficient information
* Little information about the Support Group
* Content was not realistic
* Content was frivolous
* Content trivialised the illness
* Speakers should not have played down extent of illness
* The Programme did not cover children
* The badminton woman was too negative
* No practical information on medical costs and expenses
(d) Hospitals (maternity in particular) should be targeted for a special awareness campaign.
(e) Employers should be targeted to be made aware of special conditions needed, i.e.
fluorescent lights, etc.
In the Survey conducted in September 1994, 36% stated they felt that their Doctor knew
enough about Lupus and 64% (nearly two thirds) felt that their Doctor did not know enough
about Lupus. Most people believed that these results applied to General Practitioners more
than Consultants who are considered to be more aware of Lupus. A lot of people at the Round
Table believed that General Practitioners were not particularly well informed and they should
receive special attention.
There should be a special Awareness Programme for General Practitioners and within other
areas of medical practice, some of the suggestions made were as follows:-
(a) Posters and a Fact Sheet for General Practitioners.
(b) Irish Medical Organisation (I.M.O.) Newsletter:
Inclusion of articles and information on Lupus should be sought.
(c) Professional Counselling Service which is available in hospitals should be more informed
and sympathetic to the needs and problems of Lupus patients.
This view was aimed at everybody diagnosed, but with a different approach for young
people.
On diagnosis, adequate up-to-date information should be given to the patient, both on the complaint and on the treatments and their side effects.
(i) Patients should have access to a list of Consultants who treat various aspects of
Lupus.
(ii) Patients should know what sort of treatment they can expect to get and the sort
of side effects that may occur.
(iii) They should have information on the expected medical costs and how they can be reduced with all public and private schemes.
(iv) The current literature published by The Irish Lupus Support Group should be
available in Hospitals and Doctor's Surgeries for distribution to newly diagnosed patients, not only to inform, but also to promote the development of Membership.
(d) Nursing Profession:
There should be a special programme of talks and information arranged to every area of the nursing profession. This programme should include talks by Consultants and
Members of the Irish Lupus Support Group.
(e) Training of Volunteer Members of Support Group
(i) Counselling skills:
The training of volunteer Members of the Support Group as Counsellors would
ensure that newly diagnosed or existing sufferers could avail of counselling from people with experience of living with Lupus.
(ii) Telephone Contacts:
Many people expressed the continuous view from various topics that they would like a contact list of Members in every part of Ireland to meet or talk to on the telephone. The people on these lists should be capable of dealing with every question raised by the person who makes contact.
(iii) Trained Visitors:
Again, many people expressed the continuous view from various topics that
Members should be trained to deal with hospital visitation programmes and
otherwise as required. A programme of guide lines should be prepared to
produce trained visitors at Hospitals or elsewhere.
(f) Medical Statistics:
The Check-Up programme proved to one Member that there are no proper records of
illness, i.e.: at death the medical certificates do not record Lupus as an illness but the
effects, such as kidney failure. Proper information of this kind is essential to gain
recognition, particularly in the presentation of statistical information for our lobby (to be included in the long term illness scheme) and other areas of medical care.
In the Survey conducted in September 1994, 26% of the replies stated they felt that their
family knew enough about Lupus and 74% felt that their family did not know enough about
Lupus (nearly three quarters of all the replies). Because of more pressing issues there was not
sufficient time to discuss more useful ways to exploit the needs in this area.
(a) Special Meetings of Family Members:
Members believe that the best way to increase awareness of Family Members is to
encourage special Meeting of Family Members only, Coffee Mornings.
A study to achieve this form of action should be undertaken.
(b) Social Events:
A 60's night was suggested, both as a social and fund-raising event for Families. It was
pointed out that teenagers would probably prefer to have a function for their own age
group.
(c) Active Participation with Support Group:
Family Members already participate in many spontaneous ways, i.e. sponsored
marathons. It is recognised that there are Family Members serving on the Committee.
We should establish what skills are available and how they can best be utilised.
(d) School Children and Teachers:
A programme of talks and information should be arranged in schools for children and
some talks aimed particularly at Teachers. A different agenda would have to be
considered for Primary and Secondary Schools.
The replies in the Survey stated that 42% felt that they knew enough about Lupus and 58%
stated that they did not feel they knew enough about Lupus. A greater number than half of the
replies expressed the need to know more about Lupus. It should be noted at the same time
that 95% of Members in the Survey felt that they had benefited from the Support Group.
(a) General:
Everybody agreed that more work, concentrating on awareness of Members, needs to
be done, but there were very few suggestions addressing particular action on this
problem.
(b) Information of Doctors:
Contact numbers of known GP's and Specialists and of Support Group Members
should be available to newly diagnosed patients and their families.
(c) Practical knowledge of:
(i) Lupus Clinics, location etc.
(ii) Medical costs, Chemists, claims etc.
(iii) Employers of specialised needs, i.e. light or computer screens.
(d) Local Groups:
Many times the idea of the use of small local meetings of Members was suggested.
Members would like contact lists to identify fellow Members so that they could
arrange Tea and Coffee mornings to promote awareness.
(e) Employment Prejudice:
Some people stated that they found little awareness of prejudice against Lupus sufferers in the commercial world. There were examples quoted of difficulty when attempting to obtain Life Insurance for both young and mature sufferers. Employers prejudice was also discussed and needs to be explored to establish the position generally in Ireland.
Membership of Lupus Support Group:
It was stated by a Member of the Committee that there are approximately 350 Members on
the current mailing list, including family members.
(a) In General:
There was a great desire to have smaller Group meetings among Members locally. In the area of development and increase of Membership this form of contact is seen as the best way to succeed. Members want more contacts with other members in every locality.
(b) Local Awareness Days:
It was suggested that there should be continuous local awareness days in local areas all around the country. There should be an Awareness Day at some time in some place regularly throughout the country. If they are in the form of Coffee or Tea Mornings, Members should be advised to limit the functions to Tea, Coffee and biscuits only and not let the events develop into more elaborate affairs.
(c) Involvement of Young People:
There was a great deal of mention in many areas of the need to encourage and involve young people with the support of most people present. Young people prefer to mix with their own age or peer group and this need should be prevalent when organising any project for them. In fact it may be better if they were encouraged more to help
themselves. Social outings and other activities similar to those of elder Members was
mentioned. Reference was also made to a group called "Yell" within the Lupus
movement in England, which might be copied here.
(d) Direction from Committee of Management:
Despite the many different statements looking for more autonomy at a local level, most
Members wished to work within a National body and organisation. Members want
direction from a central authority, particularly on matters which affect the development
of the Group as a whole. Members, at the same time, do not appreciate direction that
inhibits personal freedom, i.e. if a Member goes to a Lupus Meeting outside of the Irish Lupus Support Group, they should be free to go without permission of the present Management Committee.
(e) Research to Survey Age Groups:
The idea was promoted that research of Lupus Sufferers should be undertaken to identify age profiles. The result is intended to establish which age groups are the most active, the average of sufferers and so forth.
(f) In General:
There were strong views expressed in many areas which focused on the centralised
operation of the Group from Dublin. The Support Group is seen by Members as a Dublin based Group and not a National Support Group. In general it was concluded by most Members present at the Round Table that The Irish Lupus Support Group Limited should reflect a National Body in the following ways:-
(i) There should be Membership on the Committee from every branch in Ireland.
(ii) Each branch created should have local autonomy as part of an all Ireland
organisation.
(g) Local Groups and Information:
Presuming that it is agreed that local Groups and Branches receive all information on the costs and running of the National Group and so forth, then each Branch will be in a
position to budget, set targets to raise funds and contribute to retain unity as a National organisation.
(h) Membership Register:
Each Member should be requested to pay a small annual subscription to cover the cost of publications received during the year.
(i) Newsletter:
The Newsletter has been published from 1985 to date from Dublin. It was suggested
that there is no reason why each Branch cannot have a turn in producing the Newsletters, say for a period of one year at a time.
(j) Communications:
(i) Information
There was disappointment expressed that nobody was going to represent our
Members at the European Lupus Convention at Munster. People felt that they
should know this sort of information so that others would be in a position to
participate or volunteer in such a situation.
(ii) Computers
Most people understand that we can communicate by post and telephone.
However, it is also possible in the future for our Branches to communicate with
each other instantly, through new telephone technology or through a computer
terminal. This should be kept in mind as a long term possibility.
Treasury:
The Directors (Committee of Management) of the Irish Lupus Support Group Limited have
produced Annual accounts, audited annually by Messrs. Touche Ross (Accountants for the
Company).
(a) In General:
Most people believed that the most effective way to raise funds locally would be through a local Branch. Local sponsors would not be motivated to support a National cause as much as they would be motivated to support a local cause.
(b) Business Advisors:
We should have a core Group drawn from family Members and friends to advise on
fund-raising.
(c) Finance Information:
Members would appreciate the regular publication of income, costs, expenditure and
estimated budget of moneys required to cover running costs. This could be achieved in
general terms within each Newsletter published. This information and target budgets
would provide a goal to local Groups to raise funds, hold events and other activities.
Fund Raising Events:
There was a multitude of fund-raising ideas as follows:-
(i) Raffles
(ii) Marathons
(iii) Sponsorship for Local Amateur Drama
(iv) It is easier to get sponsorship on a local basis
(v) Local sponsors will support local efforts more than National ones
(vi) Local fund-raising could be accounted for centrally, but used locally
(vii) Social 60's night such as in Ormond Hotel for Members, other for
young people
(viii) Table Quiz
(ix) Sponsorship from large Companies
(x) Company Salary deduction schemes
(xi) Brick-a-Brack Sales
(xii) Mary Robinson?
(xiii) Flag Days
(xiv) Local Coffee Mornings (Each Member hold one at ,1 per cup)
during Lent
(xv) Local Cake Sales
(xvi) Young Sons and Daughters of Sufferers
(xviii) Local Whist Drives
(xiv) Hold a pink Butterfly Day (a Balloon with Butterfly logo)
(xx) Christmas Auction
(xxi) Car Book Sale
(xxii) Concert
All of the Members present agreed to:-
1. Publish a summary content of Round Table Discussion in early January or in the next Newsletter.
2. Hold a further Round Table to look at action to be taken on the content published. Members would study the ideas in the meantime and prepare constructive solutions to take action.
3. That the President will accept any written proposals for action or feedback on the content of the Round Table as published. These written submissions will be included at the next meeting.
Barbara O Neill
E. L. E. F.
European Lupus Erythematosus Federation