The Leeds Teaching Hospitals NHS Trust


General Information for all treatments


Below is a range of information that is applicable for all treatments we offer:

Patient Support Group 

This group is run by current and ex-patients who have had similar experiences and who are prepared to share their experiences. They will also be able to get information regarding groups in your locality. This is a very useful contact point for information, support and information on other support groups (local and national). We recommend that you become a member of the support group for your benefit and that of others. Any member of the team would be pleased to provide you with the contact details.

 

Welfare of Future Children 

The HFEAct states that ‘a woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father), and of any other child (other children in the household or the family) who may be affected by the birth’.

This applies to every woman whether or not she is resident in or a citizen of the United Kingdom. It is the statutory duty of every centre to have a written procedure for assessing the Welfare of the Future Child and that of any other existing child who may be affected by treatment.

Factors considered in assessment include:

  1. the couple’s commitment to having and bringing up a child.
  2. the couple’s ability to provide a stable and supportive environment for the child/children.
  3. the couple’s medical history and that of their families, considering factors that may risk the child’s wellbeing.
  4. both partner’s health (including their ages) and their ability to provide maternal and paternal nurturing to the child.
  5. the couple’s ability to meet the needs of the children in the event of a multiple birth.
  6. any risk of harm e.g. that of inherited disorders, transmissible disease, neglect or abuse.
  7. any risk a new born may put on the welfare of the existing child with in the family.

The HFEA Code of Practice (COP) also advises that views of all those who have been involved with the prospective parents should be taken into account. It is also our statutory duty to identify the person/s who will have the parental responsibility and who will be responsible for the raising of the child.

We have a protocol that has been approved by our local ethics committee. Under specific circumstances, we may also need to contact your general practitioner, other medical specialists, authorities and agencies e.g. social workers, police etc for information. This is to enable the members of the team at The Leeds Centre for Reproductive Medicine or the Clinical Ethics Committee in the Leeds Teaching Hospitals Trust formally Consider the Welfare of the Future Child when appropriate.

Please note that fair and unprejudiced counselling services are available to everybody prior to, during or after the assessment
process irrespective of the outcome of such an assessment.

 

Human Fertilisation and Embryology Act 

The Human Fertilisation and Embryology Act was passed by Parliament in 1990 and became law on 1st August 1991. Simultaneously the Department of Health established The Human Fertilisation and Embryology Authority (HFEA) for the regulation of all treatments and research pertaining to human eggs, sperm and embryos. This authority licenses centres, its staff and regularly inspects the centres for compliance with the law and the HFEA Code of Practice. By law every HFEA licensed centre is required to report every treatment cycle and its outcome to the HFEA. This information is analysed periodically and published on the HFEA website (www. hfea.gov.uk).

 

HFEA register 

The Authority keeps a confidential register of identifying information on all patients, their treatments, donors, recipients and children born after HFEA licensed treatments. This register was set up on 1st August 1991 and contains above information from that date onwards. From the 1st October 2009 the HFEA requires your permission to disclose either your identifying or non-identifying information to named researchers who approach the HFEA and have their research approved by the authority. Your consent will be requested when you are registered with the HFEA.

 

If you are using donor eggs, sperm or embryos 

Identifying information about donors is held on the HFEA Register and may be given to any child born from a donation once they are 18 years old (if the donor is registered as identifiable).

A donor-conceived person, aged 16 and over, is entitled to apply to the HFEA and access non-identifying information the HFEA hold about the donor. 16 year olds who intend to enter into an intimate physical relationship can submit a joint application to establish whether they are genetically related.

From the 1st October 2009 The HFEA permits centres to release non-identifying information to recipient couples about their donors. This includes information about the screening tests performed before donation and their results as well as personal non-identifying information such as hobbies, likes/dislikes/ professional qualifications and a personal message written by the donor.

We encourage couples to tell the child/children if donated gametes have been used. This should be done at an appropriate time in their lives. Information, support and implications counselling is available within the clinic to help guide you through this process. External support is also available- see useful addresses.

 

The Law 

Children born following treatment have the right to know of their genetic origins at the age of 18 years or at 16 years, if contemplating marriage.

This means that donors have to provide identifying information which the HFEA may release, on request, to people aged 18 years or more and who has been conceived with gamete or embryo donation.

All recipient couples and donors are advised to explore the implications of these regulations. Counselling services are available to all donors and recipient couples. When in doubt, please seek independent legal advice.

 

Legal Parenthood 

The law defines the legal mother as the woman who gives birth and her partner as the father irrespective of the source of eggs or embryos created with donated eggs unless the husband/partner can prove that he did not consent to treatment. The donor has no parental rights or responsibilities.

Both partners of a recipient couple must provide written consent to the use of donated eggs/embryos in the treatment of their partner.

Under the current law, there is no need for the recipient couple to disclose the use of donor eggs/embryos to the Registrar of Births. Therefore you will not expect to be named at any stage.

Unmarried couples concerned about parental responsibility are advised to seek independent legal advice.

 

Confidentiality 

All information regarding your treatment is strictly confidential and subject to both the HFEAct and the Data Protection Act. We may communicate with your general practitioner, referring consultant and other carers only with your written consent.

Once the information has been disclosed to unlicensed individuals it can no longer be controlled by the HFE Act although it will still be under the Data Protection Act and General Law of Confidentiality. At your GP’s practice, information will be accessible to other GPs and staff. When changing GPs, your medical records will be transferred to your new GP practice without our involvement or written named consent from you.

From time to time your notes may be inspected by HFEA members for audit, by Commission of Health Improvements (CHI), individuals working for Patient Safety Agency (PSA) and National Care Standards Commission.

You have a right to decline consent to communicate with specific people or agencies, in which we may need to consider the reasons for your refusal to consent in our assessments.

We advise you to keep your G.P. informed. They are your primary carers, will also be committed to confidentiality. Sometimes patients request their GP to keep written information regarding egg and sperm donation separate from the practice notes so that this information is not freely available to all the staff in their surgery. You may request them but they may not be obliged to do so.

We request photographic evidence of your identity (e.g. passport) which we will photocopy and along with a photograph of yourself placed in your notes, so that as treatment proceeds we can confirm your identity.

Treatment for single sex couples and single women is considered on an individual basis after careful consideration of the Welfare of the Future Child/Children.

 

Consents 

As stated above, we can only advise you with respect to the current law and the changes that we can envisage. You are advised to seek more specific and independent legal advice if you are concerned about how a retrospective change in the law might affect your legal position.

All donors and recipients are asked to sign appropriate consent forms after they have read the information booklets, have discussed the medical/ ethical issues with the doctors/nurses/counsellor, and are satisfied that their questions have been answered fully. Consents are obtained prior to donation.

Your consent advises us of your informed choice. You always reserve the right to change your mind until but not after the embryos have been transferred to the recipient. It is however important that all issues are thoroughly considered beforehand so that sudden and unexpected changes that you may later regret are avoided.

 

Specialist Counselling 

Free counselling services with a trained counsellor are available to all couples and we strongly recommend it to all those considering treatment and/or donation of gametes. This is conducted with a view to discussing the social and emotional implications of the intended treatment and its outcome on yourself and your partner. Counselling is carried out in the department of Clinical Psychology or in The Centre. Although the Department of Psychology is sited within the St James’s premises it is far removed from The Centre which you may find helpful. Needless to say that counselling is conducted confidentially and privately between your self and the counsellor and it will not be judgmental in any way. Only very essential information will be relayed back to the team and that too in exceptional circumstances.

 

New Patient Evening 

The evening includes a slide presentation by the doctors, embryologists and nurses involved with your treatment. All patients are welcome to attend. Venue, dates and times can be obtained from The Centre.

 

Patient Support Group 

This group is run by current and ex-patients who have had similar experiences and who are prepared to share their experiences. They will also be able to get information regarding groups in your locality. This is a very useful contact point for information, support and information on other support groups (local and national). We recommend that you become a member of the support group for your benefit and that of others. Any member of the team would be pleased to provide you with the contact details.

 

Nurse consultation 

You should have become fully informed before you reach this stage so that you are happy that you are signing 'Informed Consents'. If you have any doubts regarding your suitability as a donor, you are advised to book an appointment to see your consultant.

The primary objectives of this visit are for the nurse:

  • to assist with the completion of your consents and act as witness.
  • to discuss any further issues that have arisen and/or you are not clear about.
  • to perform screening tests
  • to document both your personal, medical and family histories in greater detail and on the standard forms
  • to document your physical characteristics for recipient matching
  • to record any personal messages/ hobbies/ interests/ professional qualifications and give donors the opportunity to write a personal message.

Please note that the screening tests can often take up to 3 months before all results are obtained. During this time embryos are not used but remain in storage. If the storage period expires before the test results are available, unfortunately we cannot use the embryos and have them to perish.

Embryos will be released for donation only after results of all screening tests have been obtained and are confirmed normal, and if there are no issues arising from your personal medical and family histories.

You can change or withdraw consent up to the point where embryos are transferred to a recipient woman.

 

Ethnic Minority Languages 

We will be pleased to organise a session (with prior notice) for an official translator / interpreter (if available) to translate the contents of our treatment information.

 

Glossary of Terms 

Ovary

Female gonad responsible for development of the eggs and female sex hormones.]

Eggs

Specialised female cell that develops in the ovary

Sperm

Specialised male cell that develops in the testis

Gametes

A name for eggs and sperm

Fertilisation

A term for the process by which the sperm enters the egg and its genetic material joins that of the egg.

Cleavage

A term for growth of the egg after fertilisation with an increase in cell numbers by division.

Embryos

A term for the growing ball of cells after fertilisation. Capable of developing into a human being.

Blastocyst

An advanced 5-6 day old embryo containing a large ball of cells that has divided to define parts that will form the placenta and the foetus. It contains a cavity of fluid. At this stage the embryo is ready to hatch and embed into the lining of the womb.