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NF ACTIVITIES IN THE UK
Roberta Tweedy
The NF Association
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Thank you all for being here and thank you for letting me come.
The Nf Association in England was founded in 1981 by two parents of affected
chlidren. It became a charity In 1982 and, when I started on the Management
Committee of the chanty, we had £7,000 in the bank.
The Management Committee consisted of about 28 people, all of whom met around
a kitchen table. We arrived bringing our cakes, biscuits and our jars of
instant coffee and we sat and talked. Really, we did not mind what went on
in the outside world as we complained about the doctors: we complained about
the treatments: we complained about the fact that when we said neurofibromatosis,
nobody knew what we were talking about. We complained about who was going
to do the Newsletter, the PR or write to this company or that company, we were so
disorganised.
But, we were also very fortunate in that there was a doctor called Susan Huson who had just
started doing some research into Nf and she came and said 'we have to get organised'.
By 1997, we were able to hold a Symposium in London. In 1990, we had £37,000 in the
bank but we were still disorganised and we felt we needed to do something to put us
on a more formal basis - we decided we would employ a full time paid Director.
We put over all that £37,000 to pay the Director at a rate of £18,000 a year and told
him to raise his own salary. But, because we had an office and a paid Director, John
Blackwell, we had credibility. The Director was able to go to the Govemment and go
to charitable trusts and ask for money. On his apporntment, I decided to resign from
the Committee.
Within a year he needed to hire a secretary. Six months later, he appointed an assistant
in the office and we then embarked on the first of our Family Support Workers (FSW).
Our first FSW covered the whole of the United Kingdom - Scotland, Wales and England.
She just helped people who had Nfl or Nf2 themselves or·had Nf in the famliy. Her
arrival proved such a success that we decided to put our money into building a network
of FSWs across the country rather than just concentrating on research. By the time
John retired in 1995, we had two full time FSWs and one part time.
With my experience on the Management Committee and a background of PR and headhunting,
I was appointed to take over and started to build the team of FSWs. We now have eight in the
UK and also a co-ordinator who is in charge of their ongoing training and support. We are
about to appoint another and, by the middle of 1998, we will have yet another based at
Great Ormond Street Hospital for Sick Children, London. There will then be eleven
around the country - I want to get enough money for fourteen.
How do we pay for them? Initially, we got money from the Government or From Grant Making
Trusts. I still write applications to the Government and I still write applications to
Charitable trusts and, while we get many 'nos', for every person from whom I get a 'no',
I at least have the knowledge that they have now heard about Nf so it is not a
completely wasted effort.
However, Govemment funding only lasts for three years; what then? We have found that
in each area where we have a Family Support Worker, the people who live in the area -
and that area could be huge - are so enthusiastic they get so much help from the FSWs,
that they go out raising money because they are frightened that they will leave if we
cannot afford them. So, after we have had someone in place for three years, we normally
have a third to half the salary raised every year by the local groups they support.
Our other money? Well, there is a small booklet which is printed - not by us, we have
no financial input at all but full editorial control - which is sold door to door
around certain parts of the country and we get a small percentage of the cover price.
Every issue of the booklet contains at least one Nf famrily history and it is an
extremely good way of informing the public about neurofibromatosis. Every quarter, more
than 50,000 'Introductory' booklets are sold; there are also 13,000 people who
'subscribe' to another booklet of which there are seventeen issues a year. From the
sale of these booklets, the Association receives in excess of £60,000 a year and this
money goes a long way towards covering the cost of our office - there are four of
us working full time.
This year I have managed to attract a major donor. She asked me what I wanted in
the way of financial help and I asked for her to pay the salaries of all our existing
Family Support Workers so that I did not have to worry about raising the money to pay
for them. She has pledged £150.000 a year for as long as I want it and she has left a
legacy in her Will so that the fund will continue and that takes a great deal of
pressure off me.
The Family Support Workers are based in genetic units in major hospitals throughout
the country. They go out to see families; they counsel on the telephone; they go into
schools when children are having problems with their learning disabilities and they
talk with the teachers. They help co-ordinate the care between the different medical
specialities that may be required. They go to case conferences to deal with people
with Nf2. They help organise clinics. We have clinics in each area where there is a
Family Support Worker so, as more FSWs are appointed, there are more neurofibromatosis
clinics around the country.
Two years ago, we decided that we needed a strong brand image - and I do not know
whether you have noticed or seen the pin Mary Ann is wearing - but our brand image is
these balloons. It came about because, on our headed notepaper, neurofibromatosis is
written in black with the 'N' in red. So, when we decided that the balloons were going
to be our symbol, I said that if there were going to be balloons, we had to have two
red and two black with our name underneath though at the time the colours had no
significance. Then I was asked 'why balloons?': 'why those colours' so, in true
marketing fashion I replied:
"Well, the colours of red and black were chosen because they represent danger and
the dark; we have a dangerous disorder and for years we have been in the dark. But
the balloons represent lift off, they say 'we are going somewhere'. They also represent
happiness because things are moving."
We now have balloons everywhere. We have T-shirts with huge balloons on the back: we have
sweatshirts with small balloons on the front. They are on our notepaper, on stickers
which go an envelopes, on our Fact Sheets and on our Newsletter. Everywhere.
Another thing we have done recently is gotten fed up with doctors not knowing what
neurofibromatosis is. I am not so much talking about consultants but about the general
physician, the general practitioners. So we have had a video made for the training of
doctors, in fact for the whole medical profession. It is very clinical and is
accompanied by a clinical text book. Because we funded it ourselves, we have to charge
for it but each doctor in the UK has a certain amount of money from our health service
every year to pay ior on-going training. Because they have to go on courses and keeo up
to date, where possible they choose free-bees, the ones that the drug companies give
them, so often at the end of the year they still haven't spent this money. They are,
therefore, looking for ways to spend it and I am hoping that they will buy our video.
I cannot promise that they will watch it, but even if they have it in their surgery,
they are half the way.
The Future? Well, I came over here last Tuesday. I had a meeting in Pittsburgh and there
I met a neurosurgeon. We were discussing one of his cases and it resembled a case in
London - and then I had an idea. I talked about my idea to Mary Ann and I have talked
about it with Dr Parry. I know the National Neurofibromatosis Foundation in New York
has gotten money from the Army to pay for a database but from what I can understand it
is not quite the database that Mary Ann, Dr Parry and I have been discussing.
My idea is that there should be a treatment database. I would like to see a worldwide
database to which doctors could subscribe - whether consultants or ordinary clinicians.
They would be able to enter queries about patients which could be answered by doctors
on the other side of the world - the rare complications, the common symptoms. It doesn't
matter. Put it on the database so somebody else who comes across a patient with similar
problems is able to look up on the Intemet and find out if there has been another case
in the world and talk to that doctor. Share information because doctors should not be
keeping this information to themselves but sharing it with others, free to all.
I am here to do the best that I can for the people in the UK with neuroribromatosis and
I want to share anything that I find with everybody else because I think we should all
be after the same thing - to help you and others with neurofibromatosis.
The Neurofibromatosis Association is a Registered Charity No. 284653
Patrons: Gillian Anderson, Ray Brooks, Simon Callow, Fiona Fullerton,
The Lord Grahan BA. FBIM, The Lord Richardson LVO. FRCP,
The Rev Canon Roger Royle, Julie T Wallace.
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