If you have been affected by miscarriage, would you be able to help by completing a survey about priority setting around miscarriage? The link to the survey itself is here but if you are interested in reading more about it, this may be helpful from one of the lay members who has been sitting on the group leading the project. The aim is to improve the care and treatment for women who experience miscarriage and those affected by it, and to set the priorities for research that will make the biggest difference.
Woman who have had a miscarriage themselves and their partners, family members, friends and colleagues are invited to complete the survey along with professionals involved in caring for women who have experienced miscarriage and professional bodies, patient groups, charities and other organisations involved with miscarriage.
I’m really delighted to be able to let you know that I’ve been appointed as the first Women’s Voices Lead at the Royal College of Obstetricians and Gynaecologists – you can find out more about that here and about the Women’s Voices Involvement Panel itself here. I think it’s a really exciting time at the RCOG where there is a genuine commitment to listen to women’s voices – but do read more on the website and let me know what you think!
If you look on fertility websites, you’ll often find people discussing reproductive immunology or their NK cell tests and results. What’s often not clear from the discussions is the fact that the reason many fertility specialists don’t offer this kind of treatment is because they don’t believe there is any scientific evidence to back up the theories.
This picture above is apparently an NK cell – I can’t imagine they are quite that purple in colour, but it gives them just the kind of slightly sinister look that the name conjures up. In fact, as Dr Norman Shreeve from Cambridge University explains in the latest edition of the BioNews online newsletter, the name is misleading as the cells play a key role in early pregnancy,
If you’re thinking of looking into having your NK cells tested, or taking some of the treatments currently offered in this field, you should first read the information on the HFEA website and a scientific impact paper on the subject from the Royal College of Obstetricians and Gynaecologists which is more complex but also concludes that there is little evidence to support the use of these treatments and that their use should be restricted to research trials.
If you are considering having immune tests or treatments along with your fertility treatment, it is important to have looked into this properly. You will find vast amounts of information about this online, some of it written by people who currently offer the treatment. More and more patients consider having NK cell testing along with other assessments, but not all are aware of the views of leading professionals in the field.
The things it is really worth reading about this are first, a Scientific Impact Paper from the Royal College of Obstetricians and Gynaecologists, which is the professional body for gynaecologists, including fertility specialists, in the UK. The other is the Human Fertilisation and Embryology Authority’s information for patients about reproductive immunology. These give an evidence-based view from professional experts and will give a good basis on which to make any decision about immune tests and treatments.
Are you passionate about women’s health? Would like to use your own experience of fertility issues or a gynaecological condition to have a real influence and help improve things for other women in the future?
If so, the Royal College of Obstetricians and Gynaecologists (RCOG) would like to invite you to join their brand new Women’s Voices Involvement Panel.
The panel will be a way of involving you as a member of the public in the work of the College and the wider women’s health sector. The RCOG believes that by talking to women and those who care for them; listening to their experiences, views and ideas about obstetrics and gynaecology services, they can improve the way things are done.
If you are interested, you will receive your first monthly email newsletter later this month that will tell you about opportunities there are to be involved in the College’s work. It may be commenting on a leaflet that the College is developing or to completing a survey on a particular subject. Most of the opportunities will be virtual, meaning that you will be able to get involved through email. Some opportunities may be more of a commitment – like becoming involved in a working group or committee, either at the RCOG or for the NHS. All opportunities will be voluntary but expenses will be covered if you are required to travel to take part. The idea is that the panel is a flexible approach to being involved so you can choose opportunities that suit you. Some issues may not be relevant nor of interest to you so you needn’t respond.
As the panel progresses over its first six months the email newsletter will be used to feed back how you have had an influence so that you can actually see that what you say is being taken into account.
If you are keen to be a part of the panel the next step is for you to sign up. Below is a link which will ask you for some contact details and some information about yourself. Some of the information such as your postcode, age and ethnic background may seem personal and you don’t have to answer. However if you are comfortable in doing so it will just help monitor membership to ensure there is an even spread of women from various backgrounds, locations and ages and with varying experiences. The information you provide will be treated as confidential and won’t be shared with any third party.
If you don’t know much about the Royal College of Obstetricians and Gynaecologists you can visit the website www.rcog.org.uk to find out more about what the College does. Although the College is a membership organisation for doctors who specialise in obstetrics and gynaecology, there is also a dedicated section of the website entitled Patients which you may find of interest.
I was delighted to be asked to talk at the Royal College of Obstetricians and Gynaecologists (RCOG) yesterday about the patient perspective on fertility treatment – it’s great that this is on the agenda at the College training days and that it is taken so seriously. All too often when a patient perspective is considered, you’ll find it squeezed in at the end of the day on the last day of a meeting and half the audience will slope off to get the early train home, feeling confident that they aren’t going to miss any vital piece of new scientific opinion or advice – but the RCOG had put sessions on the patient perspective and counselling at the heart of their agenda yesterday.
Having spent many years talking to other people about their experiences of fertility treatment, I’ve come to realise that how clinicians deal with their patients is an essential element of their overall service. Some scruffy down-at-heel clinics have received rave reviews from patients because of the care and attention that staff give to their patients, whilst other slick and seemingly professional places are less popular if they don’t seem to give any thought to how people feel about infertility.
I know that when you’re doing a job day in day out, it’s sometimes hard to appreciate quite what significance each word that you say has to your patients and how much is at stake for them with every stage of treatment. Having said that, I’m endlessly amazed at the stories I hear from patients who are paying thousands of pounds for treatment at clinics where they never get to see the same clinician twice, where doctors spend the first five minutes of the appointment flicking through their notes to check who these patients are and where they’re up to and where they end up feeling like a nuisance if they want to ask questions or check information.
Infertility is tough at the best of times, but being treated sympathetically by people who take a few minutes to show that they are thinking about how you feel can make all the difference and I’m just so pleased that the RCOG recognises how important this is.
There’s so much information available now on the Internet about all aspects of infertility and treatment that it can be hard to work out what to trust and what to take with large pinches of salt! I’m delighted that the Royal College of Obstetricians and Gynaecologists have updated the pages on their website aimed at women, and have made them more accessible.
You will want to ignore all the stuff on the left-hand side of the page when you click on this link as it is all the obstetrics information, but you will find more general gynaecology information on the right-hand side of the page, including updates on endometriosis, PCOS and ovarian hyperstimulation.
It’s great that the RCOG has decided to make this information more readily available, as it gives you an expert view from those who really know their stuff.