Latest report on clinic incidents

4cell_embryo.tifThe fertility regulator, the Human Fertilisation and Embryology Authority, has just published its report on the number of incidents in fertility clinics. These incidents can be all kinds of things going wrong in a clinic from a patient suffering from hyperstimulation to a letter sent to the wrong person by mistake.

Incidents in fertility clinics are rare – they occur in less than one percent of the treatments performed in the UK fertility clinics – but each incident is one too many.

The HFEA’s annual report on fertility clinic incidents shows that the total number of incidents increased slightly but for the first time since the HFEA began publishing incidents reports, there were no A grade (the most serious) incidents reported at all.

HFEA Chair Sally Cheshire called on fertility clinics to substantially reduce the rate of incidents next year. She said “The UK’s fertility sector is one of the most developed in the world, and the high level of professionalism in the sector is highlighted by both the fact that fewer than 600 incidents were reported out of more than 72,000 treatments, and that no ‘grade A’ incidents were reported in the last year. We want to ensure clinics give patients the best possible treatment, so that they have the best chances of having the families they so dearly want. So, while incidents are already occurring infrequently, we want to see them reduce even further. I’m setting the challenge to all clinics in the UK to make sure that the overall number of incidents has decreased by this time next year. It’s not only ‘grade A’ incidents that can have an adverse effect on patients. All incidents, whether it’s a letter sent to the wrong address, or a case of ovarian hyper-stimulation, can have serious consequences for patients, and more has got to be done to make sure that fewer people are affected in the future.”

The report can be found here: www.hfea.gov.uk/9449.html.

Could you help test the new HFEA website?

logo-hfeaThe Human Fertilisation and Embryology Authority is looking for fertility patients who might be willing to help test the new HFEA website and the search tool which helps you to find information about choosing a clinic.

 

The site will include patient feedback for the first time, and aims to be easier to use and understand. Before it is launched, the HFEA needs the views of people who might be using the new site. Testing can be done in London or Manchester, or even via Skype. If you are interested you can find out more about how to take part here 

 

Could you your views help other patients?

If you’ve had, or are having, fertility treatment, would you be willing to help the HFEA to find out more about patient experiences of assisted reproduction?  The HFEA  has decided to make it a priority to put patients at the heart of what it does, and is carrying out a review carried out by Opinion Leader getting views from former and current patients.

There will be focus group discussions with patients in London and Manchester, and they are hoping to recruit a mix of single people, heterosexual and same sex couples, from the NHS and private section.  The groups will be held on

27th March (Live birth group, London 6.30pm)

1st April (unsuccessful as yet, London 6.30pm)

31st March (live birth group, Manchester 6.30pm)

1st April (unsuccessful as yet, Manchester 6pm)

There will also be in-depth face-to-face interviews with donors, donor-conceived people and those seeking fertility treatment in London, and an online patient survey which will be available soon.

There will be a small payment available to those who take part (£60 for those taking part in group discussions and £45 for the face to face interviews which will be held in your own home)

If you would like more information please contact Rebecca Paton – RPaton@opinionleader.co.uk or on 07831 702 513

Putting the patient at the centre – HFEA conference

I spent the day on Wednesday at the HFEA’s annual conference where the theme for the day was putting patients at the centre of everything that the authority does. It’s a laudable aim and one that Interim Chair Sally Cheshire clearly takes very seriously. There were a series of workshops for the delegates, who were mainly representatives from UK fertiliy clinics, and many of these focused on quality of care and understanding the patient point of view. The key question is whether any of this will really make a difference to the experiences of the average patient.

When my very first book about IVF, In Pursuit of Parenthood, was published in 1998 I was invited to speak at an HFEA conference about the patient experience. I’d been shocked when I’d carried out the interviews for the book to discover the poor level of care many of my fellow patients had received from clinics, and gave a rather blistering talk about all that I felt was wrong. I hoped it would help clinics to focus more on quality of care and to think about the patient experience.

When I wrote The Complete Guide to IVF more than ten years later, things had changed but not always for the better – there was more choice for patients, but that also led to more confusion, treatment was more expensive and there were far more optional extras that patients often felt obliged to pay for in order to maximise their chances of success, yet many clinic staff were still too busy to offer the emotional support to patients that they so clearly needed.

We must hope that the HFEA’s decision to focus on quality of care is more than just another talking exercise and that things really do change for patients. There was clear resistance from some clinicians at the conference to the idea of the HFEA moving into areas which they felt went beyond the authority’s remit. Of course, there are some clinics who think very carefully about how to improve the patient experience, but if all clinics were getting it right for their patients, there would be no need for HFEA intervention. We can only hope that this really does herald a change for the better – but for now, it’s a matter of watching this space…

Professor Lisa Jardine on Woman’s Hour

If you haven’t already, do listen to this interview with the outgoing Chair of the HFEA Professor Lisa Jardine which was broadcast on BBC Woman’s Hour yesterday. It’s a great shame that Professor Jardine is standing down as Chair of the regulatory body as she has had a positive impact during her term and has been a visible figure for patients. Here  she makes the point that we really don’t address what happens when IVF doesn’t work.

I was apprehensive when I heard Woman’s Hour were covering the topic, as sometimes this debate slides into a them and us battle which paints a picture of exploitative fertility clinics, of a treatment that rarely succeeds and of ill-informed women, when in fact the picture is far more complex. Professor Jardine says she is “enough of a feminist” to believe that women who want fertility treatment at an age when it is less likely to work should be able to make that choice for themselves, but suggests that we need a more open debate about the fact that not everyone is going to come out at the end of treatment with the baby that they long for.

It is true that there is still so much stigma and anxiety around fertility that it makes having an open and honest discussion difficult at times.  I’m not sure how we change that – but there is a growing ground swell that is pointing in the right direction.

 

 

The HFEA to stay

There are some things in life that we tend to take for granted, and I think the HFEA is one of those things for many fertility patients in the UK.  It’s easy to forget, or to be unaware, of all that the HFEA does to help us.

When the government decided to get rid of the HFEA as part of its war on quangos, the idea was that much of the work of the authority could be done just as well in other places.  There were many arguments against this, but what was most worrying to me was that one of the key functions of the HFEA from the patient perspective seemed to be completely overlooked.  There were endless debates about whether the HFEA was asking clinics for too much unnecessary paperwork, about whether research decisions would be better made elsewhere and about how regulation would work, but the importance to patients of the HFEA’s role as an information provider was largely ignored.

It’s not just the annual success rates, published for each individual clinic, which are helpful to patients but the HFEA’s measured views on a range of topics.  When there’s an IVF scare story in the news, it’s the HFEA’s view which patients know they can trust to tell the truth behind the headlines.

Aside from this, the regulation of fertility clinics is something patients in the UK can take for granted.  The systems may not be perfect, but the monitoring of processes and staff means that we have safety nets in place which simply don’t exist in many other parts of the world.  The knowledge built up within the HFEA over many years in this area should not be underestimated.

It’s great that the government has seen sense and realised that getting rid of a body with such a wealth of expertise would not be sensible – although it would be interesting to know how much money has been spent arriving at this conclusion!

There will still be a review of the HFEA and the way that it works, particularly in relation to another body, the Human Tissue Authority.  Interestingly, merging these two bodies was another potentially money-saving proposal considered five years or so ago which was dismissed out of hand after consultation.

Let’s hope not too much time or cash is spent reviewing what has already been reviewed and that it is possible to use this process to come up with some sensible views about things that can be improved whilst retaining all that is good about the HFEA.