IBTS launches new free phlebotomy service for people with hereditary haemochromatosis
Monday 19th August 2013
The IBTS will provide a free phlebotomy (venesection) service for people with hereditary haemochromatosis in Ireland, whether or not they are eligible or willing to be blood donors for transfusion purposes from today Monday 19th August.
The IBTS Haemochromatosis Clinic, d’Olier Street, Dublin will be located on the 2nd Floor, Lafayette House, 1-5 D'Olier Street (at O'Connell Bridge). The clinic will be by appointment only (telephone 01 474 5000) every Monday, Wednesday & Thursday 10:00 hrs. to 12:00 hrs. (except Public Holidays)
Hereditary haemochromatosis is a disorder in which excess iron is absorbed from food into the body. The iron accumulates over years and can lead to debilitating and life-threatening complications including liver cirrhosis, diabetes and heart failure. The treatment is to remove the iron from the body, usually by taking off pints of blood on a regular basis – a process known as phlebotomy or venesection. Hereditary haemochromatosis is common in Ireland, and many of the people who need phlebotomy treatment are fit and well and able to be blood donors. This new clinic will offer a free service to people with HH, and also provide a route for them to become blood donors, hopefully on a regular basis.
Dr Ian Franklin, IBTS Medical & Scientific Director said that this would be a two year pilot project in the first instance. “Continuation beyond two years will depend on the success of the pilot in providing cost effective care to people with haemochromatosis at the IBTS. For the time being this service will be available in Dublin and later in the year from Cork only – as soon as we can we will extend it to other towns and cities.”
People who wish to use this service must get a prescription from their GP or hospital clinic on the IBTS form - available online at www.giveblood.ie. This prescription will be good for one year and for up to four phlebotomies within that year.
There will be no charge, irrespective of medical entitlement or health insurance cover.
To use the IBTS haemochromatosis clinic patients will need:
· A definite diagnosis of hereditary haemochromatosis by their family doctor (GP) or hospital consultant. This means they will have had a positive genetic test for haemochromatosis at some point;
· To be over 18 years of age; (there is no upper age limit);
· To be fit enough to have the phlebotomy performed outside of a hospital clinic – no serious heart or lung diseases, for example, or no history of recent stokes or mini-strokes. They must not be under the care of a doctor or clinic for any other condition or disease apart from haemochromatosis except for stable and fairly straightforward conditions such as uncomplicated high blood pressure well controlled by treatment, diabetes being treated adequately by diet alone, simple skin disorders or similar.
· A prescription from the patient’s doctor or clinic nurse for the phlebotomies, written on the official IBTS prescription form and signed by the patients doctor or clinic nurse:
No Prescription Form, No Treatment;
· Adequate veins in their arms to have the phlebotomy done with our standard pack – we won’t be able to accommodate people with poor veins at the clinic for the time being;
· To be able to tolerate a standard 470 ml (about one pint) phlebotomy. If they can’t, we’ll ask their own doctor to continue to provide your phlebotomies for you;
· Never to have tested positive for HIV, hepatitis C or hepatitis B;
· Not to be a current intravenous drug user;
· Not to be a current sex-worker;
· To be normally resident in the Republic of Ireland.
Patients will not need
To be a blood donor, or to want to be a blood donor, or to be eligible to be a blood donor.
Of course, we want as many people as possible to be blood donors, but blood donation doesn’t suit everyone – people who don’t feel they want to be donors, or are not eligible to be donors, will still be welcome to have their treatment at this clinic once they meet the conditions listed in the previous section.
Additional information is available under the haemochromatosis tab on the home page on www.giveblood.ie
Frequently Asked Questions
Will my blood be used for transfusion?
If you want to be a blood donor, and if you are eligible to be one (we will check this for you at your first visit), then we will arrange for you to get future appointments after your first visit at a blood donor clinic in Dublin or Cork.
Later on – sometime in 2014 or later - we will be able to arrange appointments for blood donor clinics in other towns and cities, but for the time being we are limited to Dublin and Cork. You don’t have to live in these cities, but you’ll have to be prepared to come to the clinics there.
However for your first visit to the IBTS we will discard the blood we take, whether you are eligible as a blood donor or not.
What happens if I don’t want to be even considered as a potential blood donor?
That’s not a problem – we are happy to provide the service for people whether they want to be blood donors or not.
Why is the IBTS doing this?
By increasing the access for people with haemochromatosis to free phlebotomy, the IBTS can legally use blood collected from people with haemochromatosis who otherwise would have to pay for the service. For very good reasons, it is against the law to collect blood from people who have a financial reason for donating. So by removing the financial reason, we can safely collect blood from blood donors with hereditary haemochromatosis.
Also, the IBTS is good at taking large volumes of blood from people – we can do it more efficiently and at a lower cost to the public than anyone else. So it’s a good thing to do for several reasons.
What if I have insurance cover?
We will not be charging the insurers for the service. It doesn’t matter to us whether you have insurance or not.
So how do I access this service?
· If you would like to come to the IBTS clinic, ask your doctor or clinic nurse if they think it would suit you – they can look up the information for doctors and clinic nurses on www.giveblood.ie if they wish. If they think that you are suitable to come to us, make sure that they give you a signed IBTS prescription form, which will state the number of phlebotomies for us to perform over a twelvemonth period. You will need this form to have the treatment done by the IBTS:
NO PRESCRIPTIONFORM, NO TREATMENT.
(You’ll need this form renewed every 12 months by your doctor or clinic nurse.)
· Then phone 01 474 5000 – the IBTS d’Olier Street Clinic – to make an appointment. At this point in time we will provide this service on Mondays, Wednesdays, and Thursdays every week (except public holidays) between 10:00 and 12:00 hrs.
· You won’t have to wait more than 3 months for your first appointment, or for any subsequent appointment. (We expect the waiting time for the first appointment to be much shorter than three months at all times, but it will depend on demand for the service.)
What happens if I can’t make it for my appointment?
If you call the clinic beforehand, we will reschedule you for a time as close as possible to the original date. If you just don’t show up, you can call us later to reschedule. We’ll do our best to accommodate you as soon as we can. However if you don’t show without having let us know more than a couple of times, we’ll ask your own doctor to resume your care. This service may be free to the public, but we need to use the public resources as efficiently as we can.
The Irish Haemochromatosis Association provides detailed and helpful information for members of the public who want to find out more about haemochromatosis on www.haemochromatosis-ir.com
