Menopause and me report

Healthwatch Herefordshire undertook a survey of women about their experience of seeking information, support and advice or treatments for the menopause to feed into the ICB's work to deliver services to women on this issue.  They heard from 213 women.

While there were some positive comments about services many women were not satisfied and felt that their menopause concerns were not listened to, taken seriously, dismissed or were minimised. Least satisfied were those who had early menopause, women still having symptoms and difficulty in later life or post menopause and women with surgical menopause.

For many women symptoms are extremely debilitating or may become so. Women can be distressed and baffled by changes affecting them negatively and don’t always see this as menopause related. 12 It takes too long to gain an appointment and the length of time of an appointment and insistence on dealing with just one issue means that diagnosis can be delayed. Short appointments also limit effective discussions and explanations that will support women to be self-assured in their self-help and to know confidently when to seek help.

Women currently feel that they are having to do their own research to ‘arm’ themselves to seek the NHS care they need. Women often do not know where to go for reliable advice and information that is not given at their medical practice.

Women feel that they are left without ongoing care or monitoring for far too long. In particular if sent away to see how symptoms develop or if put on medication of a particular sort or dose or with a coil or the pill still in use, or later in life when possibly post-menopausal. There is evidence that women give up trying to improve their symptoms, give up taking treatments with side effects or no effects and do not know that there may be alternatives. For many this has a very adverse effect on their mental health. For others it takes a long time to return leading to unnecessary lost years of debilitating symptoms and knock on effects of broken relationships and employment loss. Others resort to ill afforded and sometimes unreliable fads and private treatment.

Although there were women that had positive experiences too, many women described experiences where they were given appointments with medical practitioners that did not appear to have expertise in menopause. Consequently, they faced delays to get a clear diagnosis or were misdiagnosed. Women felt that too many professionals were not trained to know the latest advice re HRT and other options and so they often received contradictory and inconsistent messages when they returned and had to see a different practitioner and there were unnecessary delays in getting treatment, information and advice. In the worst cases women felt they were expected to put up with debilitating symptoms. Women said that they were not well served in identifying tools, ways and treatments to address specific difficult symptoms. Information was sparse, generic and relied on women doing their own research. Women were concerned that they did not know what Internet and other information was reliable.

Many women wanted to be referred directly to experts or well women clinics where expertise was not available at their medical practice. Many women wished for there to be specialised women’s clinics where they could expect expertise and access directly without going through their medical practice. Women with multiple conditions, early menopause and medical menopause in particular experienced difficulty gaining sufficient tailored expertise. Many women also preferred a medical professional of a particular gender mostly female.

Many women felt that they would have weathered perimenopause and menopause with less difficulty if they had understood more prior to onset of symptoms.

Some women had good experiences, but lack of understanding, outdated attitudes and training were a strong feature in most survey responses.

Women want treatment options as well as knowledge and focussed ideas and solutions to a wide array of symptoms. This will combat misdiagnosis, dismissive attitudes, delays in treatment, increase efficient use of appointment time, increase continuity and offer a more compassionate effective service.

Healthwatch Herefordshire’s surveys indicated that there is an inconsistent often low quality provision of information to women which causes confusion and risks women accessing unreliable sources. All aspects of perimenopause and menopause information was requested including where to find peer support and how to discuss menopause with employers.

Women raised a number of questions about their treatment offers in the NHS which pertain to NHS policy and strategy.

Menopausal women experienced poor coordination and consistency between medical practices and mental health services that caused considerable delays to treatment. Similarly, women who had undergone surgery experienced lack of coordination and consistency between medical practices and hospitals concerning medical menopause.

Many women spoke of issues and difficulties at work and retaining employment whilst managing perimenopause and menopause. Unsupportive attitudes and lack of understanding of employers and coworkers drove many women to reduce hours, leave work or change jobs. These included women who worked for the NHS and local authority who are frequently experiencing high staff turnovers and poor staff retention. There were a few examples of workplaces with good menopause support.

Women encountering the most difficult menopause symptoms ask for wider community education, reasonable adjustments, support and understanding to find the best treatments and strategies to retain their skills and expertise in the workplace.

Many surveyed women found it hard to cope with this stage in life because of the lack of understanding of the wider community and their partners, husbands, friends and family. This could make them feel very isolated. Many felt they must suffer alone.  Greater understanding could support women, help to normalise and reduce stigma and encourage women to seek help earlier. Many women valued peer support but felt it wasn’t always readily available.

Women expressed many concerns about HRT which greatly benefitted many and didn’t suit others.

Women explained what the information and knowledge they wanted to know whether directly from a medical practice, a women’s clinic or NHS events, including dealing with symptoms, the pros and cons of HRT and lifestyle changes.

Many women suggested that it would be helpful to have more women’s support groups or events in which they could feel able to discuss menopause issues, gain ideas, support and information as well as expertise.