Campaigns - Embryo, Gamete Storage
This section gives the history and updates to the campaign
Martin, Robert, 13 Embies/snowbabies/children/siblings-to-be and Michelle's Situation (summarised)
2000
Michelle was carrying our baby (Robert). She was told that if she gave birth she would kill him and gave uninformed consent to a caesarean surgical extraction. She had wished to give birth to our child.
She then bled a little and according to an Independent Medical Legal Doctor she did not require to be taken back into theatre however she was told she HAD to go back in. She brought up the topic of hysterectomy and said that it was not to be done under ANY circumstances. Martin and Michelle were assured it would not be done.
Unfortunately for the family an illegal post pregnancy hysterectomy with removal of the cervix was done to Michelle. The family were graciously permitted for them to keep her ovaries.
Media refused to cover post pregnancy hysterectomy consequently our family were not in a position to protect ourselves as we did not know it could/would be done to our family..
2001
Michelle, Martin (and Robert) undertook a cycle of IVF treatment – PAID FOR BY THEMSELVES, NOT NHS. A batch of 6 embryos were created and frozen at Manchester Fertility Services.
2002
Michelle, Martin (and Robert) undertook a cycle of IVF treatment – PAID FOR BY THEMSELVES, NOT NHS. A batch of 7 embryos were created and frozen at Manchester Fertility Services.
2002/3/4/5
Storage fees paid for by Michelle, Martin (and Robert), NOT FREE ON NHS.
2005
We received a letter from the clinic Manchester Fertility Services to say that our embryos were reaching 5 years. We were under the impression that it was an administrative detail to continue storage for another 10 years and as Michelle has irreversible infertility we could keep them until she was 55. Our understandings were gathered from information given to us by leaflets from Manchester Fertility Services.
2006 - *a little wish* brings the subject to the media's attention and consequently those that it impacts and those that can change the law
We discovered in January that this was not the situation and were finally given new documentation that showed that there was discrimination to embryos that needed a host surrogate and they must be destroyed after 5 years.
Our family asked what could be done to keep the embryos. The clinic said there was no way around the problem.
The HFEA were contacted and they suggested taking the embryos out of the country.
For many months our family had difficulties obtaining information about undertaking this task.
1st May
Our situation is revealed in the Daily Mail...
Details and discussion here - http://forums.a-little-wish.co.uk/Default.aspx?g=posts&t=275
1st May 2006 - Daily Mail, extract here
1st May 2006 - BBC web page
2nd May 2006 - GMTV
3rd May 2006 - Manchester Evening News
9th May 2006 - Manchester Evening News
9th May 2006 - BBC National News Video link
Other media coverage here - http://forums.a-little-wish.co.uk/Default.aspx?g=topics&f=19
5th May
Meeting at MFS where a form was completed and a telephone call was made. We understood there was to be a meeting at the HFEA within 4 weeks (2nd June 2006) and we would find out IF we were allowed to take them out of the country. At the moment the embryos will stay in cryopreserve (a container of liquid nitrogen) until the results of the licensing committee are though.
Robert has asked to see a picture of the 'eggies' however as suspected no photographs are taken of them. So we will look them up on the internet for him. Since our media coverage he now calls them embryos and no longer eggies.
We still NEED a place in another country for our embryos. If we cannot find a destination for our embryos they will have to be perished.
Once our application is put before the licensing committee there is no guarantee that they will allow us to send our little embies to another country however the indicaitons are we should be allowed. There is a chance that we may still be carrying out the funeral of our loved and wanted children/siblings-to-be, either due to the licensing committee, or by not being able to find a new home for our embryos.
Rest of May
We contacted the clinic to find out an update and to find out the date of the meeting at the HFEA and were told by the secretary, ‘you will be told what you need to know, when you need to know it.’
2nd June (4 weeks later)
No knowledge passed of any meeting at HFEA.
No permission/refusal given to take the embryos from the country.
No contact from HFEA.
We rang the HFEA however ‘we do not speak to individuals, we only deal with clinics.’
No knowledge if any places for the embryos have been found by the clinic Manchester Fertility Services or HFEA.
Our family continue our search.
30th June (further 4 weeks later)
Very little information given to our family by the clinic Manchester Fertility Services or HFEA.
No knowledge if any places for the embryos have been found by the clinic Manchester Fertility Services or HFEA.
Our family continue our search.
26th July 2006
Nearly Three months later
Our family has been left in limbo for nearly 3 months, the HFEA and Manchester Fertility Services have dismissed our family and our enquires with comments such as ‘we do not deal with individuals only clinics’ and ‘we will tell you what you need to know, when you need to know it’, respectively.
As a result of forcing us out of the equation we have not been given adequate, meeting dates, updates or results of correspondence relating to OUR children-to-be and the future of OUR family.
For nearly 3 months we have not been kept ‘in the loop’.
After nearly 3 months of waiting to for the date which the HFEA will meet to decide IF we are allowed to take OUR embryos out of the country we discover there is a licence to do so, however it will expire NEXT WEEK!
We are now seeking an accurate and FULL chronology of events and other information to be able to move forward.
To date no *suitable* surrogate has come forward to give the other 7 embryos a chance of coming into the world.
31st July 2006
(over the weekend a local newspaper has covered our situation)
To date no response from the HFEA to provide information that would allow us to work though our feasibility study.
To date no FULL chronology of events and other information has been provided by Manchester Fertility Services.
(Waiting to hear if BBC local is going ahead with its update)
(Granada reports unable to assist us)
August
The first week of August after a slow start resulted in some coverage. The story taken up was that we HAD a licenice, but no one told us.
Through the media we discovered ...
- the export licence is now open ended
- the clinic is talking with a Finish clinic
We have requested from the clinic (23 and 27 July) chronology of events and paperwork that we need for the American clinics.
To date this has not arrived (7th August)
We have requested of the HFEA the process for taking embryos out of the country and returning them to this country. (23 July)
A letter from the HFEA saying that all the process has to be undertaken via the clinic. They have passed us details of the meeting dates and the outcomes and a few other details - thank you.
September
Letter from MFS with information of their enquires.
October
No further update to report
November
No further update to report
December
No further update to report
Where is Surrogacy Legal?
America - Yes ish
YES (we understand) - Alaska, Arkansas, Arizona, California, Florida, Idaho, Massachusetts, Montana, Oregon, Ohio, Texas, Washington,
Conflicting information so possibly - Michigan, New York.
NO (we understand) -
Belgium - Yes, not really any more, there has been a very negative surrogacy incident.
Cyprus - Yes
Finland - Yes
Germany - No
Italy - No
Russia - Yes however not able to store our embryos, legal issues too complicated.
Spain - No
Sweeden - No
2007
*a little wish* continues to campaign on this issue to and tries to raise awareness and ask for media assistance
2008
*a little wish* continues to campaign on this issue to and tries to raise awareness and ask for media assistance
- Human Fertilisation and Embryology Act 2008 - HFEA summary
- Human Fertilisation and Embryology Act 2008 - government website
- Petition, set up, please sign
- Template Letters, to be sent the the Department of Health, Local MP and HFEA
- 13th May 2008 *a little wish* media coverage by Imagine FM radio
- audio link
- 5th June 2008 - Committee Stage
- 18th August 2008 *a little wish* media coverage by BBC Manchester Radio
- news item
- audio link here
- 27th September 2008 *a little wish* wrote to the committee to remind them of our requests and try and obtain an update due to conflicting information
- letter to committee
Mr. Tom Clarke - no acknowledgement or reply to date
Sir Liam Donaldson, Chief Medical Officer - no acknowledgement or reply to date
Mr. Roger Gale - no acknowledgement or reply to date
Dr. Ian Gibson - no acknowledgement or reply to date
Dr. Evan Harris - no acknowledgement or reply to date
Mr. Jim Hood - no acknowledgement or reply to date
Dr. Brian Iddon - no acknowledgement or reply to date
Ms Helen Jones - no acknowledgement or reply to date
Mr Robert Key - no acknowledgement or reply to date
Ms Steve McCabe, Lord Commissioner of Her Majesty's Treasury - no acknowledgement or reply to date
Mr Chris McCafferty - no acknowledgement or reply to date
Ms Laura Moffatt - no acknowledgement or reply to date
Ms Julie Morgan - no acknowledgement or reply to date
Mr Mike Penning - no acknowledgement or reply to date
Ms Dawn Primarolo, Minister of State, Department of Health- reply 10th October 2008
Dr. John Pugh - no acknowledgement or reply to date
Mr Mark Simmonds - no acknowledgement or reply to date
Mr. Gary Streeter - no acknowledgement or reply to date
Dr. Desmond Turner - no acknowledgement or reply to date
Mr Jeremy Wright - no acknowledgement or reply to date
- 2nd December 2008 *a little wish* is contacted about the consultation for our feedback.
We have replied with details requested. We are awaiting the consultation.
2009
*a little wish* continues to campaign on this issue to and tries to raise awareness and ask for media assistance
- 5th January 2009 *a little wish* will receive a copy of the consultation, if you would like a copy please contact us
- 5th January 2009 *a little wish* embryo campaign on Channel 4 website
- 6th January 2009 *a little wish* embryo campaign on AOL 4 website
- 7th January 2009 *a little wish* media coverage by BBC Manchester Radio
- news item - audio link here - website link
- 7th January 2009 *a little wish* media coverage by Granada Tonight News
- news item - link here - website link
- January 2009 BAD NEWS from the consultation!!!
The consultation has been deliberately written so that embryos currently out of date will not be ‘made legal’ again!!!!
Who's idea and was this and Why?
"The proposed regulations will not "make legal again" embryos which are currently in storage illegally. This is discussed, albeit not explicitly, in paragraphs A.39 - A.42 of the consultation.
I have put together a short note detailing why this is so, to explain how implementation and commencement of the law works."
- 2nd February 2009, media request for awareness assistance
- February 2009 *a little wish* meets with the Department of Health
Devastating news. Their legal department have said that it cannot be back dated. This is not what we had been lead to believe.
- 2nd March 2009, media request for awareness assistance
- we need the media to help and support us as they did in 2006
- we need someone to come forward and assist with with FREE legal advice
- we need people to sign the petition
- we need people to come forward and be part of *a little wish* and show their support
Thank you to ...
... 3rd March Imagine FM *a little wish* media coverage by local news
- news item - audio link here - website link
... Pray cross fingers etc for more help!!
- 19th March 2009 Contact from the British Medical Association (BMA)
The BMA contact us to say that they would support a move to backdate legislation to legalise all embryos.
- 30th March 2009 *a little wish* submits its reply to the Department of Health's Consultation
Time to hope and pray, and get a plan B ...
Thank you to ...
... 6th May Imagine FM *a little wish* media coverage by local news
- news item - audio link here - website link
... Pray cross fingers etc for more help!!
- 6th May 2009 (unexpected) Department of Health
Reports on each set of draft regulations following consultation are available.
http://www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_098882
Part 1: The Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations (PDF, 183K) Download
BAD NEWS - First consultation, Page 20 'Concerns about the transitional provisions' says that they cannot be backdated ...
Some stats
The Act has been broken down into 4 parts and not every stakeholder has concerns about every part.
Part 1: The Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations
(*a little wish* is directly quoted in this section of the document)
18 of the 31 stakeholders invited, attended a meeting, including *a little wish*.
26 of the 48 stakeholders submitted a written response to the storage regulations including *a little wish*.
10 stakeholders attended a meeting and submitted a written response to this section including *a little wish*.
Part 4: The Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations
17 of the 31 stakeholders invited, attended a meeting, including *a little wish*.
25 of the 48 stakeholders submitted a written response to the storage regulations including *a little wish*.
10 stakeholders attended a meeting and submitted a written response to this section including *a little wish*.
Thank you to ...
... 5th July Sunday Times *a little wish* media coverage by national newspaper
- news item - website link
... Pray cross fingers etc for more help!!
Thank you to ...
... 5th July BBC Radio 5 with John Pienaar and Dalya Raphael *a little wish* media coverage by national radio
- news item - website link
... Pray cross fingers etc for more help!!
Thank you to ...
... 6th July Daily Telegraph *a little wish* media coverage by national newspaper
- news item - website link
... Pray cross fingers etc for more help!!
Thank you to ...
... 6th July Daily Mail *a little wish* media coverage by national newspaper
- news item - website link
... Pray cross fingers etc for more help!!
Thank you to ...
... 6th July Daily Mail *a little wish* media coverage by national newspaper
- news item - website link
... Pray cross fingers etc for more help!!
- 13th July BioNews *a little wish* was asked to write a commentary for the site/newsletter
- news item - home website link - article introduction - article link
- 9th September 2009
Getting there ...
The Human Fertilisation and Embryology Act 2008 comes into force on the 1st of October.
It'll allow embryos to be stored for a decade rather than five years.
Still work to do as that only leaves some with a year or so ...
Statement
Health Minister, Gillian Merron said:
"We are updating the law to allow women to store their embryos for longer than the current five years. These new rules will come into
effect on the 1st October and I will be seeking to make an Order to Parliament to ensure this applies to embryos that are 'out-of-time' on
that date.
"A small number of women will have reached the five year limit before 1 October and without the action we are taking, would have had their embryos destroyed. They will now be able to store them for longer.
"For these women, this is tremendously important as it is all about extending their chance to have a much -wanted child. Their circumstances are morally straightforward but legally very complex - we have been urgently seeking ways to help them and I am very pleased today to be able to give them hope by taking this commonsense action."
Background info
Several women whose embryos would have been destroyed under existing laws, losing the ability to have their own children, have been given fresh hope by new measures enacted today by Health Minister Gillian Merron.
The women, who would have had to have their embryos destroyed by law because they reached the five year storage limit, will now benefit from the new Human Fertilisation and Embryology Act which comes into force on 1 October.
Women will now be able to store their embryos for ten years rather than five.
Until this week, the law would not have been applied, meaning several women’s embryos would have been destroyed.
But following detailed consultations with Department of Health lawyers, Gillian Merron has found a solution which enables the new law to be applied.
The Minister will now make an Order under the HFE Act 2008 on the grounds that the 10 year rule can apply to out of time embryos on the basis it would be a ‘supplementary provision’ to the Act.
- Update Details