NEW BEGINNINGS

A MESSAGE FROM ANNE GILLHAM

– HAEMOPHILIA NURSE CO ORDINATOR SOUTH AFRICA

-MEMBER OF THE CENTRAL REGION HAEMOPHILIA FOUNDATION

– MEMBER OF THE WORLD FEDERATION OF HAEMOPHILIA NURSES COMMITTEE

TO ALL HAEMOPHILIACS AND THEIR FAMILIES IN SOUTH AFRICA

 

I would like to speak to you all today about "New Beginnings"

The various Haemophilia Foundations have been around in South Africa since around 1970

Whilst much has been achieved from the hard work of many people, I have a feeling that the time has come to try and inject a new "life body" into our organisations

Before we talk about how we can do this , to encourage us , let us look at what has been achieved by other countries. 

  • National Haemophilia Foundation with offices and paid staff
  • Regular publications for NMO and Doctors
  • Management of Haemophilia Care legislated
  • Quality of life assured for all affected persons
  • Money poured by foundation into research
  • Powerful lobby group for HIV rights

 Now you may think "well look at all these countries and how wealthy they are"

However I would like to reassure you that all of these groups had humble beginnings.In all these countries Haemophiliacs across the board, rich poor, influential, disadvantaged, employed, unemployed were thrown together in a forced brotherhood of suffering

Many of you understand what that means. The rarity and the lack of knowledge regarding Haemophilia caused untold suffering.These very people, scattered by vast distances, decided to pull together and lobby for their own health

They decided to stand together and DO something

They decided not to wait for the very busy people in the hospitals to fight for their rights

They decided to fight for their own rights and they did not give up.

Firstly they made themselves visible as a group, through press and constant communications with their Department of Health

They made themselves visible to their treaters and demanded better care

Then they looked for funds

All of these people were affected haemophiliacs or family members. Giving up their precious time and energy to lobby for their cause

But all the effort paid off

It was not an overnight affair but in the first world they have gone from strength to strength

They have got to the stage now that they are looking to assist their brothers in other countries less fortunate than themselves

Yes we would like their assistance,but why should we always hold out the begging bowl?

Why can’t we do it ourselves?

The time has really come for us to say yes, lets band together and do it ourselves

We haven’t done too badly

  • We have 5 Haemophilia Comprehensive Care Centres and whilst we may not all have enough resources we have the expertise and skills
  • We have our own SAHF
  • We have regional support groups
  • We have a Haemophilia Medical advisory committee

 And yet we still have majority of our brothers untreated and undiagnosed

 CareGivers can achieve a certain amount of good for their patients, after that it is the drive of the affected people

The need of the affected people that will tip the balance between essential treatment and good or excellent, adequate treatment for all

How can you all do this?

  • By participating actively in your foundation
  • Debate amongst yourselves
  • Get Involved
  • Make Constructive suggestions and then turn them into action
  • No deed that you can do is too small to offer

 In September this year the International Society of Haematology Africa- European Meeting is being held in Durban

This is a very prestigious meeting

The Haemophilia Director of King Edward VIII Hospital , Dr Kenoyer, suggested That a Haemophilia Workshop / Symposium be included in the program

The point of this was to:

  • Bring expertise to those treating people with Haemophilia
  • To increase the profile of Haemophilia
  • To bring treatment deficits to the attention of the DOH
  • To Invite the WFH to attend and use their expertise and influence to assist us in our lobby for better care

Meetings will be held between the DOH, WFH and SAHF prior to the Symposium

The DOH will make the opening speech and participate in the Symposium

The onus now lies with the Haemophilia Foundations as to whether all these efforts will be quietly swept under the carpet,

or

if they will just be impossible to ignore

We would like to know that as many people as possible, will support this meeting and the Biennial General Meeting , which is to be held the afternoon before. There is a cost involved. We would like to know that Haemophiliacs do not just think they cannot attend due to the cost , but that they will make a plan.

We would like the department of health to know that we care about ourselves and we will not just accept "no treatment"

We have really come to the crossroads where it has become too hard for treaters to fight endlessly for budgets to treat us

We cannot expect them to have to fight that battle endlessly

 

We have to take this up ourselves

If any of you have any comments to make or would like to be more involved in your foundation and don’t know how ,

Please Contact

Sr Anne Gillham on agillham@haemophilia.org.za