Organising BMT in the UK from Abroad
There are two hospitals in the UK that are designated centres of excellence and offer bone marrow transplantation for CGD.
To refer a member of your family to one of these centres, you need to contact them and submit a referral request.
They will need the name of your doctor and any other doctors involved in your care.
1. Great North Children's Hospital, Newcastle upon Tyne, United Kingdom
Institute of Cellular Medicine
Paediatric Immunology Department
c/o Ward 3
Great North Children's Hospital
Queen Victoria Road
Newcastle upon Tyne
You will need to contact the following two people:
1. Consultant Dr Andrew Gennery
Tel: +44 (0) 191 282 5234
Fax: +44 (0) 191 273 0183
2. Private and International Patient Services Manager Lesley Waugh
Tel: +44 (0) 191 282 0592
2. Great Ormond Street Hospital for Children, London, United Kingdom
International and Private Patients Service
The Harris International Patients Centre
The Octav Botnar Wing
Great Ormond Street
You will need to contact the following two departments:
1. The International Private Patients Service
Tel: +44 (0)20 7762 6822
(Main switchboard phone number: 020 7405 9200)
Fax: +44 (0)20 7762 6743
2. Commercial Services Manager Lorraine Clark (For cost enquiries)
Tel: 020 7829 8612 or 07787 893728
United Arab Emirates
Great Ormond Street also has an office in the United Arab Emirates which will refer you to the UK hospital for stem cell transplantation:
Great Ormond Street Hospital for Children
International and Private Patients Service
Dubai Health Care City
PO Box: 505050
United Arab Emirates
Tel: +971 4 3624722
Paying for stem cell transplantation
For people living in the European Economic Area (EEA) there are reciprocal health care agreements to cover the costs of stem cell transplantation.
Countries covered by this arrangement are:
- Czech Republic
- Greece Hungary
- Republic of Ireland
- Netherlands Norway*
- United Kingdom
- (including Gibraltar)
* Iceland, Liechtenstein and Norway are not member states of the European Union (EU).
** Switzerland is not a member state of the EEA or the EU but it has a separate agreement with the EU.
If you live outside this area, you will need to raise funds for stem cell transplantations treatment in the UK. We advise you to contact your embassy, speak with your employer, your health insurance provider or anyone who might be able to help support the treatment.
Unfortunately the CGD Society cannot offer any direct financial support. However, if you are willing to share details of your funding needs with us, we will contact members of our global CGD community. We can send an email to all our members and add the information to our Facebook page to help raise awareness and support for your fundraising.
How much does private stem cell transplantation cost?
It is difficult to say how much private stem cell transplantation treatment would cost. An estimate is £150,000, excluding accommodation needed pre and post-transplant, and travel. However, each patient is different and costs may vary depending on individual circumstances. Patient’s tissue type and donor match information will also probably need to be re-checked.
Parents or guardians of children with CGD who are coming to the UK for stem cell transplantation should make sure payment for treatment is arranged before they arrive at the hospital to ensure the admission process goes smoothly.
There are four main ways you can pay for private stem cell transplantation:
1. From your own funds (self-pay)
You will receive an estimate of the expected cost of treatment before you or your family member travel and when you are admitted to hospital – when you will need to pay. You will need to sign the estimate.
2. Sponsorship through your embassy
Patients being sponsored for healthcare by their embassy need to provide a letter of guarantee. The letter must clearly state that the embassy will cover the total cost of care and refer to any exclusions to full payment. You’ll need this letter as soon as you book stem cell transplantation treatment at a hospital. When you get to the UK, you may need to visit your embassy to register. Your embassy in your own country should be able to tell you if you need to do this before you travel.
3. Employer or other third party sponsors
You will have to provide confirmation if an employer or other third party is paying for the stem cell transplantation treatment. The required amount must be deposited in your hospital account before you are admitted.
4. Medical insurance
If you are paying for stem cell transplantation through medical insurance you will have to supply confirmation of the cover before you or your family member is admitted to hospital. It must include the name of the insurance company and policy number. You need to notify, check and get confirmation from the insurance company before you or the person in your family with CGT is admitted to hospital. Pay particular attention to any exclusion or maximum benefits/limits.
If the medical insurance company already has an arrangement with the hospital, they may be able to pay them directly. If they don’t have an arrangement, you will need to pay in advance yourself and reclaim the money from your medical insurance company later. Check with both the insurance company and the hospital about their arrangements with each other.
What happens when you arrive at the hospital?
You will be asked to sign a declaration (registration) confirming you will need to pay the hospital the estimated costs yourself if any of the above sponsors don’t. You will also need to provide photographic identification which is a passport for non-UK residents (or a driving licence for UK residents) and proof of your address.
You must deal with any deposits, payments or pre-authorisation, before you travel. If you don’t your admission or appointment can be cancelled even if a booking has been confirmed.
What happens after treatment?
You will be sent an invoice within two weeks of being discharged from hospital. The invoice will be submitted directly to your sponsor, unless you paying for the treatment yourself. If you are paying for your child’s stem cell transplantation, for example, the invoice will be submitted to you as the parent or guardian.
What about if you need additional treatment?
The estimate you received will have been compiled from the referral which was sent to the consultant before you or your family member was admitted. If additional treatment is needed after the stem cell transplantation, you’ll be charged more. If the treatment is not urgent, you will be asked if you want to go ahead with it. If you do, you’ll be referred to the billing department to pay. However, if the treatment is urgent, the hospital would proceed without delay.
It is important that you understand the financial implications of treatment and discuss this fully with the hospital.
Read more about the different types of CGD.
Our website contains a wealth of information to help and support you. If you are not able to find the answer to a specific question, feel free to contact us using the form at the bottom of the page or by emailing or calling us. We are here to help.