Written evidence submitted by Manor Gardens Welfare Trust and The Dahlia Project [FGM0001]

Manor Gardens Welfare Trust (MGWT) is a health and wellbeing charity founded in Islington in 1913. Our mission is to support individuals facing multiple forms of disadvantage, particularly those from migrant, refugee, and marginalised communities. This includes 121 advocacy and support, health awareness and screening programmes, psychotherapeutic support and research.

Over the years, we have pioneered a range of health and wellbeing services, including the first psychotherapeutic service for survivors of Female Genital Mutilation (FGM) in 2016, the Dahlia Project, established by Dr Leyla Hussein OBE. Dahlia is currently led by psychotherapist Njomeza Kartallozi. It provides one-to-one and group therapy, offering a safe space where women can process their trauma and reclaim control over their bodies and identities. The project also advocates for systemic change, including the availability of reconstructive surgery and psychosexual support for survivors as a member of ACERS-UK. As part of ACERS-UK, Manor Gardens has organised a series of focus groups with FGM survivors to ensure there is clarity of understanding around their needs and wants with regards to access to psychosexual support and reconstruction.

This submission presents evidence from direct service delivery, survivor testimonies, research and consultations with FGM-affected communities.

1. Health Problems Women Present With

Women who have undergone Female Genital Mutilation (FGM) experience a complex range of physical, psychological, and social health issues. These problems are often lifelong, with survivors frequently presenting with chronic pain, severe emotional distress, and difficulties accessing appropriate care. Many women do not realize that their ongoing health complications are related to FGM until much later in life, often after pregnancy or repeated medical visits.

Physical Health Issues

• Chronic pain and recurrent infections
  Many women suffer from persistent pelvic pain, urinary tract infections, and painful menstruation. Scar tissue in the genital area leads to urinary difficulties, cysts, and abscesses, often requiring medical intervention. One survivor had been to A&E multiple times for excruciating period pain, yet no one had explained to her that FGM was the cause. She said, “I didn’t know what was happening, now I know it’s because of FGM. I am so angry!”

• Obstetric complications
  FGM increases the risk of prolonged labour, perineal tearing, postpartum haemorrhage, and obstetric fistula. Women with Type 3 FGM (infibulation) often require de-infibulation (surgical opening) during pregnancy or labour, yet not all NHS maternity services are equipped to handle this appropriately. One survivor recounted discovering she had FGM only when she gave birth:

“During labour, everyone was panicking—midwives, doctors. I nearly died. After I gave birth, the midwife took my husband aside and told him, not me. I felt so ashamed like it was my fault. As I got to learn more about FGM, it all makes sense—the painful sex and the periods.”

• Sexual dysfunction and relationship difficulties
  Many survivors report painful intercourse, reduced sexual sensation, and difficulties maintaining intimate relationships. Due to cultural and social pressures, women often feel they must endure discomfort in silence. Njomeza Kartallozi said, “Most women feel pressured not to say anything, so they go through the motions, endure the pain, and don’t want to lose their partners.”

• De-infibulation needs and surgical barriers
  Women with Type 3 FGM often need de-infibulation to relieve pain, improve sexual function, or facilitate childbirth, yet access is inconsistent across NHS services. Survivors have reported being met with ignorance or stigma when requesting the procedure, further discouraging them from seeking care.

Mental Health Issues

The psychological impact of FGM is profound and often lifelong. Many survivors experience post-traumatic stress disorder (PTSD), depression, anxiety, and deep-seated feelings of guilt and shame. These issues are often left untreated, as mainstream mental health services fail to provide culturally competent, trauma-informed care.

• PTSD, anxiety, and depression
  Survivors of FGM frequently experience flashbacks, panic attacks, and persistent fear and distress. Many struggle with suicidal ideation, isolation, and profound feelings of hopelessness. The trauma is often compounded by experiences of migration, displacement, and additional gender-based violence.

One survivor described how therapy had helped her: “Before I started therapy, I didn’t leave my house for days. I had so many difficulties, I had headaches and felt tearful all the time. Now I already feel stronger and hopeful.”

• Guilt and shame
  Many survivors describe intense shame around their bodies and sexuality, often reinforced by negative or uninformed reactions from healthcare professionals. Njomeza Kartallozi said, “Women have been taught from childhood that speaking about FGM is taboo. They have suffered in silence for decades.”

Survivors often feel guilt for passing the practice down through generations before realizing its harm. One woman shared, “I called all my children back home and told them, ‘Never do FGM to your daughters. I now understand.’”

• Anger and betrayal
  As survivors come to understand the impact of FGM, many express deep anger—toward their families, their communities, and the system that failed to protect them. Njomeza Kartallozi said, “Women are often very angry about what has happened to them, but that anger is rarely acknowledged.”
• Social isolation and lack of peer support
  Many women affected by FGM feel profoundly alone, as the practice is rarely discussed even within families. One survivor said, “I have five sisters, but I never spoke to any of them about the effect FGM was having on us.”

For some, participating in group therapy is the first time they have shared their experiences with other survivors. One woman said, “I never knew other women felt like this too. It’s been so helpful to talk and know that I’m not alone.”

• Psychosomatic symptoms
  Many survivors experience severe anxiety-related physical symptoms, including chronic fatigue, migraines, chest pain, shortness of breath, and digestive issues. These symptoms often lead to frequent hospital visits, yet many healthcare professionals fail to recognize the link between FGM and these medical complaints.

Njomeza Kartallozi said, “The women I work with are so scared when they are alone that their anxiety levels become unbearable, and they end up in A&E thinking they are having a heart attack.”

Case Study: The Hidden Costs of FGM on Mental and Physical Health

A young woman, unaware of the long-term consequences of FGM, had been rushed to A&E multiple times due to debilitating menstrual pain. She was treated for infections and given pain relief, but not once did a doctor explain that her condition was caused by FGM. After joining a Dahlia Project group, she learned the truth.

“I felt like I had been lied to my whole life. I was angry. Why didn’t anyone tell me this before?”

Another woman, who had never spoken about her FGM experience, finally found the courage to open up in a support group:

“I thought I was the only one. I never spoke about my fears before. The sessions are helping me, for the first time, to really say how I feel.”

2. Are UK Services Fit for Purpose?

The UK’s healthcare system does not provide adequate, trauma-informed care for FGM survivors. The few specialist services that existed have been steadily dismantled, leaving survivors with nowhere to turn for psychotherapeutic support.

The Dahlia Project was contracted to provide specialist therapy within four London-based FGM clinics. Over time, funding for this work was withdrawn, and services were replaced with generic mental health support that fails to meet the needs of FGM survivors.

In the last clinic where Dahlia continued to operate, the project withdrew because the dedicated therapy space was removed. The therapist was asked to hold sessions in a medical examination room with stirrups—a setting that completely disregarded the trauma needs of survivors. This was not an environment where women could safely process their experiences.

Funding for FGM-specialist therapy has become increasingly difficult to secure, despite the fact that generic mental health services are not appropriate for FGM survivors. We now rely on individual giving and small grants to provide this essential service. Women who are referred to mainstream services often disengage because their experiences are not understood.

Njomeza Kartallozi explained:
"Anxiety is an overwhelming problem for the women I work with. They are so scared when they are by themselves, and their anxiety levels are so high that they sometimes end up in A&E thinking they are having a heart attack. Most of them experience psychosomatic symptoms like migraines, chest pain, fatigue, dizziness, headaches, back pain, shortness of breath, insomnia, abdominal pain, and numbness, and these are a constant theme in the group sessions."

Healthcare Professionals Are No Longer Equipped to Support Survivors

Before the COVID-19 pandemic, there had been progress in professional awareness regarding the trauma and care needs of FGM survivors. However, since the pandemic, survivors are once again reporting retraumatising experiences when accessing NHS services.

Survivors have described encounters where doctors, nurses, and midwives have reacted with horror or disgust upon seeing the evidence of FGM. This response leads to shame, humiliation, and withdrawal from healthcare.

This breakdown in professional awareness has serious consequences. Women who feel judged and shamed in medical settings are far less likely to seek critical reproductive, gynaecological, and maternity care.

Barriers to Reproductive Healthcare and Cancer Screening

Manor Gardens provides wider health and wellbeing work and specialises in working with minoritised communities. This includes cancer screening awareness programmes and services for pregnant women from refugee backgrounds to enable them to improve their maternity outcomes. Manor Gardens has identified severe gaps in healthcare access for women from FGM-affected communities. Many women do not attend cervical screenings or obstetric appointments due to past trauma.

• Smear tests: Many survivors avoid cervical screenings because they associate any form of vaginal examination with pain and trauma.
• Maternity care: Women with FGM miss obstetric appointments because medical environments trigger feelings of fear, vulnerability, and lack of control.
• Gynaecological care: Survivors avoid seeking treatment for chronic pain, infections, or postmenopausal complications because of past negative experiences in medical settings.

Psychotherapeutic support is essential in ensuring that survivors feel safe to access healthcare. With the removal of specialist services, survivors now face worsening mental health outcomes and continued disengagement from healthcare.

Manor Gardens’ experience working with minoritised communities also highlights the importance of proactive outreach:

• Healthcare providers must actively engage with FGM-affected communities, ensuring that women feel safe to access medical services.
• Specialist FGM services should be re-established and expanded, rather than replaced with generic mental health support.
• Training for healthcare professionals must be improved so that survivors are met with sensitivity, not shock or avoidance.

3. Barriers to Accessing Care

Survivors of FGM face multiple barriers that prevent them from accessing healthcare. These barriers are not just logistical but also psychological, cultural, and systemic. Many survivors experience a lack of trust in healthcare professionals, fear of judgment, language barriers, and structural discrimination that leaves them unable or unwilling to seek medical support.

Psychological and Emotional Barriers

Many survivors avoid medical settings due to past traumatic experiences and deep-seated feelings of shame. This prevents them from seeking care, even when they are in severe pain or experiencing serious health complications.

Njomeza Kartallozi explained:
"At the beginning, there is a great reluctance to engage or talk about what has happened because it is so shameful. Once trust has been established, there is a huge unburdening as they start to be able to talk. But many women have been frightened into silence for years."

In 2024, Manor Gardens was commissioned by Islington Public Health to research barriers to maternity services experienced by migrant, refugee and asylum-seeking women. We primarily interviewed pregnant women from FGM affected communities. Our Bright Beginnings Report found that fear of authorities and social services discourages many survivors from seeking care. Women from migrant backgrounds often assume that engaging with health professionals will lead to state intervention in their families.

One woman shared:
"I didn’t want to go to the health visitor because I thought they would judge me. In my country, when people from the government come to your house, it’s never a good thing."

Mistrust and Discrimination in Healthcare

Healthcare professionals often lack training in how to sensitively handle FGM-related issues, leading to retraumatising interactions.

One survivor described her experience in a hospital setting:

"I was in hospital for something unrelated, but when the nurse saw my scars, she looked so shocked. She didn’t say anything, but her reaction told me everything. I felt humiliated, like I wasn’t normal."

The lack of trauma-informed care leads to many survivors disengaging from essential health services, including smear tests, gynaecological exams, and pregnancy-related care.

The Bright Beginnings Report noted that many families prefer to see private doctors or travel back to their home countries for treatment rather than engaging with UK healthcare services. This is especially worrying when they travel back to countries without legislative protections against FGM where risk of re-infibulation is present.

Language Barriers and Lack of Interpretation Services

Language barriers are a major obstacle for many FGM survivors, particularly for asylum seekers and migrant women.

• Interpreters are not always available or speak the wrong dialect, leading to miscommunications.
• Some women are forced to rely on family members as interpreters, including children, which prevents them from speaking openly.
• Many women are unaware that they are entitled to free interpreting services and do not know how to request one.
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One woman explained how this impacted her access to maternity care:
"My main problem is that I do not know any English. This fact affected negatively the level of services I have received. After I registered my daughter with a GP, I never received any written communication translated into my language or spoken communication with the help of an interpreter."

Cultural Barriers and Fear of Stigma

Many survivors come from communities where discussing FGM is taboo. Some women fear that seeking medical help could lead to ostracisation from their community or even retaliation from family members.

One woman shared:
"The biggest fear I have is the shame I would have around my community. Just to do that would be so courageous and so scary."

The Bright Beginnings Report also found that some communities mistrust NHS maternity and sexual health services because they believe they will be judged for their cultural practices.

Avoidance of Reproductive and Sexual Health Services

Many FGM survivors actively avoid gynaecological and reproductive health services, even when they experience chronic pain, infections, or complications during pregnancy.

• Some women refuse smear tests because they associate them with past trauma.
• Others skip maternity appointments due to fears of retraumatisation or culturally insensitive treatment.
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Njomeza Kartallozi described how fear prevents many women from accessing care:
"Women aren’t sure what to expect. Many are too scared to seek support. They suffer in silence with painful periods, recurrent infections, and difficulties passing urine, but don’t seek medical help."

One survivor described her experience of learning about FGM’s impact on her body too late:
"I didn’t know what was happening, now I know it’s because of FGM. I am so angry!"

March 2025

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