The pre-recorded contributions from the HFEA to the programme were added to by the distasteful spectacle of the regulator staging a police raid at the ARGC and its sister clinic, just a few hours before broadcast. This raid provided the closing footage for the Panorama programme, plus a news bulletin 'story' with which the BBC could further publicise the programme. Angela McNab, the Chief Executive of the HFEA, maintained that there was no HFEA involvement in this media event. However, in a BBC radio debate with her the day after the broadcast, Dr Evan Harris MP of the House of Commons Science and Technology Committee said that the timing of it suggested an organisation 'playing to the cameras'. And as the British Fertility Society said, the HFEA's collaboration with the making of the prejudicial BBC Panorama programme was entirely inappropriate.
The stage-managed media spectacle indicated the HFEA's lack of concern for ARGC patients undergoing treatment on the day of the raid and broadcast. The anxiety and confusion the HFEA's actions might have caused patients made us wonder whether the Authority's attack on the most successful IVF doctor in the UK was really in keeping with the interests of infertile couples.
A hastily-gathered together group of ARGC patients and former patients held a protest of support with our families outside the ARGC premises on 21 January. The lack of response from the HFEA prompted me and 85 other patients to write formally to the Chair and Authority membership. The Authority's reply was perhaps well-intentioned but full of platitudes and failed to address the issues flagged up as a cause of concern to ARGC patients.
Mr Taranissi's two clinics are under investigation on a number of counts. In relation to the timely filing of paperwork to the regulator, this no doubt warrants appropriate disciplinary action. However the public smearing of his reputation seems hugely disproportionate to the offence. In relation to the unlicensed clinic(s), it appears that this is not yet proven and is a matter for legal investigation which should be conducted away from the media glare, in order to avoid distressing patients and to prevent premature conclusions being drawn.
With respect to the offering of unproven immunological treatments, as reported on the Panorama programme, the HFEA's own website notes that this is not illegal or improper in any way. Patients must be informed of the experimental nature of the treatment, and its risks and benefits and those of us who underwent immunological treatments at the clinic were indeed informed of their nature. We also understand that other clinics routinely offer such treatments.
For us, one of the most distressing aspects of this affair is the way that infertile couples were portrayed as desperate, vulnerable victims open to exploitation by a scheming and manipulative clinic. We find this extremely patronising. We are all intelligent, informed and perfectly capable of making important decisions for ourselves about our health, our lives, and our potential children. We do not need the HFEA's paternalistic 'protection'. If we choose to undertake controversial treatments, be these proven or unproven, that is our choice. It is not for the HFEA to deny us choice under the pretence that we are incapable of making decisions ourselves - as Liz Forgan, a former member of the HFEA, put it in an interview on BBC Radio 4.
Our experiences of the ARGC and the treatment offered were universally excellent. The clinic's outstanding success rates are achieved through hard work, attention to detail and the professional approach of Mr Taranissi and his dedicated staff. Mr Taranissi personally reviews each patient to ensure that everyone gets the best possible chance to conceive. The clinic remains open at weekends and public holidays for daily blood tests, with treatment tailored to the needs of each patient. Close attention is paid to each patient's response and medication is adjusted daily, resulting in the best possible number of eggs collected and ultimately, embryos.
Many other clinics simply don't put in this effort to ensure their patients get the best possible care and ultimately, a pregnancy. Many prescribe standardly, without monitoring patient response. If the HFEA truly listened to patients, they would discover that our biggest concerns are actually about the underperforming clinics which many infertile couples are forced to attend due to inadequate NHS funding.
The HFEA should concentrate on investigating clinics with poor live birth rate results. They should provide clearer statistics about success rates and treatments to enable patients to easily compare clinics. There should be full transparency about how the HFEA compiles league tables. The recent awarding of '-29' to the ARGC for 'poor compliance' no doubt caused concern to patients and has yet to be explained in full by the HFEA.
We all expect public bodies to serve our needs and to behave in a way that is accountable. A first step towards this would be to ensure there is a stronger patient voice on the HFEA board, so that our interests can be genuinely safeguarded. HFEA patient representatives should also hold regular consultation sessions with patients, in order that our views can be made known to board members. We hope the HFEA will respond to our concerns on this matter promptly and in full.