Lime interview - Community & Support
SAVE THE ACLT FROM CLOSURE
Lime speaks to Beverley De-Gale, co-founder of the ACLT about the organisations funding crisis
It has to be every parent's worst nightmare, to be told that your child or a loved one has a life threatening illness and to battle with a blood related cancer without ever giving up hope of finding a potential match. While the need for donor organs is three to four times higher than among the general population, donation rates are low among black people. This reduces the chances of finding a successful match.
I lost a good friend and neighbour to a life threatening illness she spent many years having kidney dialysis which was draining for her and her family. She was unfortunately not given the chance of an organ donor and died in 2010. Black people have to wait on average about twice as long as a white person for a kidney transplant. Less than one per cent of people on the NHS Organ Donor Register are from the black community.
In 1996 Beverley De-Gale and Orin Lewis founders of the African and Caribbean Leukaemia Trust [ACLT] set up one of the most successful leukaemia charity's in the UK and it has been said by many that they have been doing what the government hasn't been doing and saving lives in regards to matching donors from the African, Caribbean and Mixed Raced community.
They charity was launched to respond to the lack of ethnic minority groups registered as potential bone marrow donors. Through years of fundraising to generate awareness, the ACLT have brought the number of people registered from 550 to 35,000 and counting. With the struggling NHS and cuts being the order of the day in 2011 and the recession charities such as the ACLT are a lifeline to families that would otherwise be overlooked because of race.
Beverley De-Gale's driving force has come from her son, Daniel, who was in need of a bone marrow transplant and held out hope for several years before finding a donor but sadly died from non-related complications in 2008. But the years of anxious waiting on a list exposed a truth: the pool of black donors was virtually dry. The ACLT desperately needs cash donations if it is to remain as successful in connecting those that need our help and is counting on our communities to act as everyday heroes
In January the charity launched an emergency national appeal to urgently raise £80,000 by the end of March 2011 to avoid closure. Lime finds out more.
What lies behind the reluctance of black and Asian people in Britain to act as blood and organ donors? Statistically, they are far less likely to come forward as donors than their white compatriots?
There is a general apathy about this subject because sadly most people do not see it as their problem because it does not affect them directly. We get calls into our office from newly diagnosed patients or family and friends of patients who need our help now. One thing we are frequently told when trying to sign up new donors is 'I do not have the time' 'I'm frightened of needles' 'Can they clone me' 'Don't they drill into your bones to get the bone marrow out' There are many myths, fears and taboos about this subject matter and throw in a few cultural and religious myths about registering as donors and you have it all. It is because of all of the above why we do a lot of educational awareness presentations about being donors so that we can blow away all the fears our communities have about donation and I think we are doing a good job.
All we ask is that when we are hosting recruitment drives that the public come along and watch a 10-15 minute presentation about becoming donors and to then make an informed decision about signing up right there and then. If at that point they still walk away, I can respect their choice because they are now armed with the information and have made a personal choice but please don't say 'no' until you have the facts.
I read a quote where you stated "this is a problem that is inherent in the black community and we need to prove that we can solve some of our own problems and should not take it for granted that if we need a blood transfusion that we will be able to have this"; with this in mind are individuals becoming more proactive in donating blood and organs?
The numbers of people from the BME communities signing up as donors is very encouraging; however, we still have a long way to go. We are making headway but sadly we are still losing too many lives simply because a matching donor was not found in time. The only way we can really see a major shift in the numbers signing up as donors is a mass UK wide campaign to initially raise awareness followed by a recruitment campaign. This will only happen if we can recruit volunteers to assist our campaign and an increase in funds to ensure the message is heard by all and getting communities excited about the prospect of saving a life.
It has been said that the ACLT have been doing what the government haven't been doing and have been literally saving lives. Why has the government struggled with helping with this issue and what makes the ACLT so successful considering it is such a small charity?
The ACLT is typical of most charities in the reasons it was originally set up. We found ourselves in a situation which if we did not take action our son was definitely going to lose his life. We had no option something needed to be done. Our work is purely about awareness and taking action. Others (Anthony Nolan, National Blood Service, British Bone Marrow Registry and patients and families) had tried to raise this issue prior to Daniel's diagnosis but they had failed.
When we started in the mid 90s the apathy was staggering but we persevered and eventually we started to see results. I think our community warmed to our appeal because Daniel was this cute little boy who spoke eloquently, appealing to save his life alongside (us) his parents explaining what was needed. An International Media appeal a continual clear message with some celebrity support and amazingly against the odds a matching donor was eventually found. The community watched as Daniel was able to recover and blossom into a young man focused on exams and succeeding made the community realise how powerful this whole thing was and they reacted by signing up to see if they could assist others in need.
I think this issue is low on our government's priority list and I suppose they also felt that nothing needed to be done because the ACLT was offering a service and actual matches were occasionally being found. However, we offer more than a service because with matches being found patients are able to receive transplants at a much faster rate which means a benefit to the NHS. Could you imagine the impact in the numbers of people registering as donors if the government invested in our work? We could recruit donors at a much faster pace and the numbers of matched donors would inevitably increase.
The ACLT are often invited to events to recruit potential donors and raise awareness of their work
What responses have been achieved from the Blood Donor Workshops?
The ACLT has worked with the National Blood Service for a number of years raising awareness about becoming blood donors and also recruiting bone marrow donors to their 'British Bone Marrow Register'. Since my dear son Daniel passed away in October 2008 we have held annual 'Daniel De-Gale' blood donation sessions to encourage the Black and Mixed Race communities to donate 1 unit (470mls) of blood at donation centres throughout the UK on the week of his passing.
Daniel passed away on the 8th October. Following that first session they can donate blood once every 16 weeks, up to three times a year. Blood donation is required to assist people who need blood transfusions to assist various life threatening conditions from major surgery to the treatment of various cancers including leukaemia. The Daniel De-Gale sessions have been successful and we are seeing people registering to give blood who have never donated before but want to do something positive.
In what way will the £80,000 make a difference to how the charity is run at the moment?
The 80k will help cover core costs of the charity until the end of September 2011. We have until the end of March to raise the 80k and by then we will have launched a campaign to help sustain the charity beyond September 2011 by campaigning to the BME communities about financially supporting the ACLT by making regular monthly donations. Anything from as little as £3 per month will make our work possible now and in the future.
If enough people set up regular giving donations we will achieve a lot but we will need thousands of people in the community to stand up and be counted. We also have many amazing people who have organised fundraising events which will bring much needed funds into the charity and are assisting us to reach our 80k target. We are also applying to various grant making bodies, churches and corporate.
Could you offer some insight into the waiting process of being on the NHS register and the stress on a family waiting for organ donation?
Not knowing if a match is going to be found in time to save your life and living from day to day in the hope that you will get that call to say a match has been found is literally like waiting for an almost impossible dream, especially when you know so few people from your community are signing up as donors. But we must be hopeful and dreams do sometimes come true.
To help sustain the patient whilst awaiting a bone marrow match, the patient will undergo bouts of chemotherapy/radiotherapy and other treatments) which it is hoped will keep the cancer cells at bay but this treatment is not always guaranteed and the chances of relapse will get greater the longer you wait. If a patient does pass away it may be due to the toxicity of treatments becoming too much for the body and causing other problems or they may suffer a relapse of the cancer and so could no longer fight the condition.
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