Juliet Albert, FGM maternity lead at Imperial College Healthcare NHS Trust, said awareness of FGM had greatly improved in the past decade, leading to increased number of referrals to specialist clinics like the ones for pregnant and non-pregnant women she runs at Queen Charlotte’s and Chelsea Hospital.
“It would be fantastic if in 10 years’ time you didn’t need me or an FGM clinic anymore”
However, she suggested that many nurses, midwives and doctors were still fearful when it came to dealing with FGM cases and often did not know what to do or where to turn for help.
“Awareness among nurses and midwives has definitely increased in terms of basic knowledge – most people have heard of FGM, whereas 10 years ago everyone would look blankly at me,” she said.
“The difficulty is that unless you work somewhere where you see a lot of women with FGM, you don’t know how to diagnose different types,” she said. “I think there is quite a lot of fear among professionals about getting it wrong, saying the wrong thing, being too frightened to ask.
“There is a lot of panic. I get lots of phone calls and emails saying ‘we don’t know what to do’,” she told Nursing Times.
Ms Albert, who was a project manager for the Department of Health’s FGM Prevention Programme and involved in writing policy and delivering multi-professional training around the country, also said misconceptions and lack of understanding could sometimes get in the way of providing the best care.
“Some people are very judgmental and very quick to say things like ‘it’s ignorance’ or ‘it’s barbaric’ – things that aren’t actually that helpful when you are talking to women,” she said.
“They don’t realise how complex FGM is and the pressures on women and families to perpetuate the practice,” noted Ms Albert.
“There is quite a lot of fear among professionals about getting it wrong, saying the wrong thing, being too frightened to ask”
She said there was a need for more training and steps to ensure all health professionals were confident when it came to seeking help and making referrals for FGM diagnosis and treatment including deinfibulation – also known as FGM reversal – for women with the most severe form of FGM.
“A lot of healthcare professionals don’t really know where to find a specialist who can help them if they’re not sure what to do,” she said. “For example, practice nurses must come across women when they are doing cervical smears that need deinfibulating but may not know where to refer them.”
However, she highlighted that the Royal College of Midwives was in the process of setting up a specialist FGM network to improve healthcare professionals’ access to help and advice.
Nursing Times spoke to Ms Albert in the wake of a major funding announcement by the Department for International Development, which is putting an extra £50m into tackling FGM in Africa.
The funding – described as the largest ever investment international investment to end FGM – will support community projects in places like Sudan, helping grassroots campaigners raise awareness of the dangers of FGM and lobbying for the practice to be outlawed. The money will also help doctors, midwives and nurses care for survivors.
Ms Albert described the new funding as “fantastic”. “The fact that… more than 200 million women are affected by FGM means we have got to do something,” she said.
“Girls are literally being butchered and unless you spend money educating women living in rural areas of countries where it is being practised, then you’re not going to stop it happening,” she said. “It would be fantastic if in 10 years’ time you didn’t need me or an FGM clinic anymore.”
In the meantime, Ms Albert stressed the need to improve and invest in UK-based services to ensure all women here could get the specialist help they needed – including those living in areas where numbers affected by FGM were low.
“We find in our clinic that we’re picking up a lot of other problems in pregnancy that no one has picked up on”
While it made sense to focus provision on areas with highest need, she highlighted that women often had to travel a long way to see a specialist.
“In low prevalence areas you can’t necessarily have clinics all the time, but you can get specialists moving around – perhaps being a bit more mobile,” she said. “Quite a few hospitals in high prevalence areas have got a specialist FGM midwife but in low prevalence areas it may just be a safeguarding lead who is meant to do FGM as well but hasn’t got that much training.”
She said it was also important to ensure it was as quick and easy as possible for women to get appointments without the need for a GP referral. “For a lot of women, if they don’t get deinfibulated quickly, they won’t access it at all – they’ll be too frightened and give up or will look into it and then change their mind,” she warned.
Crucially she emphasised the importance of providing specialist counselling and bilingual “health advocates” recruited from FGM-practising communities to act as a bridge between women and support services.
She explained that health advocates had an absolutely crucial role at her clinics which provide a range of services, including FGM diagnosis, deinfibulation under local anaesthetic and referral to uro-gynaecology support for complex cases.
“We find in our clinic that we’re picking up a lot of other problems in pregnancy that no one has picked up on, because the woman doesn’t speak very good English,” she said. “It might be she has not been attending appointments such as appointments for gestational diabetes. We had a woman in the other week – in her notes it just said a normal delivery for her first baby, but she told us the baby died a week later, so it was actually a neonatal death.
“We have also had third degree perineal tears that have not been documented, because women are not being asked the right questions and don’t really understand what is going on,” said Ms Albert.
As well as supporting women during counselling and FGM clinic appointments, health advocates help them access wider health services and support, including assisting with benefit claims, securing assessments for children with special needs, and joining English classes.
Ms Albert, who has also worked for Barnardo’s National FGM Centre, maintained that in the current financial climate investing in counselling and advocacy services may well be a better use of money than attempting to establish new FGM clinics.
While new provision was “desperately needed” in some areas like Manchester, she said it may make more sense to concentrate on enhancing existing provision elsewhere. Her warning follows the closure last year of the highly successful community FGM gynae clinic she established in Acton, which was forced to shut after 10 years when the local authority withdrew funding.
“Midwives are much cheaper than doctors, and we’re even cheaper if we’re community based”
She said she was aware of NHS England plans to set up a series of new midwife-led community-based FGM clinics but there were questions about sustainability of funding.
“NHS England is trying to set up some midwifery-led community-based clinics because midwives are much cheaper than doctors, and we’re even cheaper if we’re community based,” she said. “However, they have only got funding to last to March 2020 and after that I don’t know what will happen – whether those clinics will simply close down.
“We need to make sure we are spending money on the right things,” she said. “Where clinics already exist, we should be making sure there are health advocates and counsellors in all of those clinics, rather than panicking too much about making them community-based and setting up new clinics if we don’t really need them.”
Other steps to improve provision include the development of new training for FGM specialists. Ms Albert, who co-wrote online training on FGM for the Royal College of Midwives, revealed that she was currently developing a deinfibulation training course for midwives. She said a key element would be observing the technique in practice.
“I think there is a deinfibulation course run by doctors but ours is going to have a more practical focus and will involve coming and observing a couple of deinfibulations in clinic, so they can see what it is actually like in real life rather than just simulating it on a model or watching a video,” she said. She hoped the course would gain accreditation from the RCM and be available from early this year.
“I had never actually heard about FGM before and it was a shock to me at the time”
Overall, she said she was passionate about her work with women with FGM, which all started when she encountered her first case in the late 1990s. While working as a one-to-one midwife, she was called out in the middle of the night to see a Somali woman who was giving birth unexpectedly suddenly at home.
“I got there and the head was just coming out – the husband basically caught the baby,” she recalled. “Afterwards I got a lamp to look at her perineum and straight away saw she had FGM. I had never actually heard about it before and it was a shock to me at the time.”
She went on to attend a training day run by the charity Forward that inspired her to take action and campaign for the establishment of FGM services for women living in and around Acton and Ealing, where prevalence is particularly high.
She told Nursing Times that it was “such a privilege” to work in the field. “I feel really lucky to work with women who have FGM, because I suppose I feel I can make a real difference to them and because so often they have suffered from really bad care,” she said.