“No decision about me without me” is at the heart of proposals in the Health and Social Care Bill that is currently before Parliament, aiming to put patients at the centre of the NHS. Do these proposals, which hope to involve patients in decisions about their treatment and care, extend to women?

While the expected answer would be yes, a report by the All-Party Parliamentary Group on Women’s Health has concluded that across the country, women are not treated with dignity, are not diagnosed correctly and are not given adequate information, when it comes to their physical, mental and gynaecological health.

The report summarised responses from patients and hospital trusts and found that alarmingly over 40 per cent of women said that they had not been treated with dignity and respect, and 40 per cent of women with endometriosis needed to visit their GP 10 times before they were referred to a specialist. In the case of uterine fibroids, which are non-cancerous tumours of the womb, over 1 in 10 women said that they had to wait 1-2 years before they were diagnosed with their condition. These worrying findings for the two most common gynaecological conditions in the UK have been reported on extensively in the media this week, with coverage on the BBC and national newspapers, including The Telegraph and The Guardian.

Uterine fibroids are known to cause women extreme pain, and treatment can involve surgery. One patient whose experience was used as a case study in the report described how she was told by her GP that “fibroids don’t cause any problems, and there’s nothing you can do about them anyway”. After a couple of years of enduring crippling period pains she was eventually referred to a gynaecologist who recommended that she should have a myomectomy, which is the surgical removal of the fibroid. This patient had been recommended a myomectomy as she wanted to have a family; an alternative treatment commonly used to treat uterine fibroids is hysterectomy, in other words removal of the uterus, leaving the patient with no chance of having children. A second patient describing her experience said that she was offered a hysterectomy, with no other information provided to her and the impact of the procedure not discussed. After fighting for it, she received more information about further treatment options and had an alternative treatment.

The findings of the report by the All-Party Parliamentary Group on Women’s Health are echoed by the results of two Freedom of Information requests and an online patient survey performed by the Medical Technology Group and patient support group, FEmISA, into uterine artery/fibroid embolisation (UAE/UFE). UFE is a non-surgical treatment for uterine fibroids – less invasive than a hysterectomy, it does not require removal of the uterus thereby preserving fertility, and has a faster recovery time. Crucially, UFE has been approved as being safe and efficacious by NICE, and has been recommended in their clinical guidelines for women with heavy menstrual bleeding associated with uterine fibroids who want to retain their uterus and/or avoid surgery. On the other hand, neither hysterectomy nor myomectomy have ever been reviewed for safety and efficacy.

However, the surveys found that hysterectomy is the ‘default’ treatment for fibroids, UFE is often not offered to women by treating gynaecologists, and is not considered by some Commissioners for fibroid treatment. This, despite the potential faster rehabilitation with UFE versus hysterectomy (1-3 weeks compared with 2-3 months for abdominal hysterectomy), lower lengths of hospital stay (1-2 days compared with 5-7 days post-hysterectomy) and the possibility that a woman could retain her fertility.

In the most recent 2016 study, acute NHS Trusts reported that the average rate for hysterectomy nationally is 73 per cent, compared with 6 per cent for UAE. A distinct lack of progress since 2011, when one response by a local trust to an MTG survey, stated that UAE/UFE is not commissioned by them because it is a “Procedure of Limited Clinical Value and is covered under this value”. This raises questions, as to why this would be, considering that NICE has approved UFE as being safe and efficacious and that NICE Clinical Guidelines on Heavy Menstrual Bleeding (CG44) state that women with symptomatic fibroids larger than 3cm requiring in-patient treatment must be offered UFE, hysterectomy and myomectomy, but few are. In addition, in cases where UFE is clinically appropriate, why should women have to ask their clinician to make a special funding application on their behalf?

When women were asked about whether UFE was discussed as a treatment option with their gynaecologist, 44 per cent said they were told about UFE, and 35 per cent were offered it. This compares with 73 per cent of women who were told about hysterectomy and 51 per cent were offered it.

“No decision about me without me”, may be the mantra of informed decision-making in healthcare, but is it possible for women to make informed decisions if their access to some treatments is restricted?

The MTG report has many recommendations for many groups, from the Department of Health to the Royal College of Obstetrics and Gynaecology, urging clarity on commissioning guidance to ensure there is no regional variation in access to UFE, and to ensure that all treatment options are discussed fully by clinicians with their patients.

March 2017