Navigating and using healthcare for urogynaecological conditions

This section covers:

  • Seeing healthcare professionals
  • Booking appointments and waits
  • Navigating healthcare services

People we talked to often expressed appreciation for healthcare professionals and the NHS, but experiences varied and finding a way around healthcare services could be a particular challenge. It could be confusing and frustrating to feel that nothing was happening or that you were just going around in circles, and hard to make sense of the structure of healthcare services which could vary from place to place.

Beth described feeling “lonely” and feeling like “no one really has your back” when navigating her way through urogynaecology healthcare. [Spoken by an actor]

Seeing healthcare professionals

Seeing a healthcare professional who seemed to listen and care was very important for most people. Mary X praised the urogynaecology nurses she has seen; Pauline described her nurses as “very caring” and “reassuring”. Vickie appreciated that her consultant would “hold my hand when I cried my eyes out and I think he absolutely recognised the impact it was having”. Melanie said her GP was “lovely” and had done more to help her with UTI problems than “probably most GPs” would.

Chloe’s urogynaecologist gave her “reassurance” and made her “a bit more hopeful about the future”.

Jordan has recently had a good healthcare experience around pronouns and not making assumptions about gender identity.

Sometimes it was difficult to build up a relationship with an individual healthcare professional. Continuity of care with a trusted professional was sometimes lacking and some found they saw a different doctor each time. Kezia, Elizabeth, and Fiona said it was hard to build understanding when you don’t see the same healthcare professional, and you are “forever having to repeat” things.

Jan finds it challenging to get appointments with the same GP every time.

However, being reliant on one key individual could also be a problem, as Chelsea found when the only member of staff trained to do a particular treatment went on sick leave.

Some people told us that they had seen arrogant, rude or dismissive healthcare professionals. These experiences could be very off-putting and difficult to shake off. Jessy summed up how unsettling this could be, wondering will they “be receptive, or is he going to shoot me down?”

The thought of going back for another appointment with a rude or uninterested healthcare professional was very off-putting and could stop people from seeking medical help. This was the case for Cynthia. When she did return to ask for help, she felt scolded for not having come back sooner. Having an unpleasant interaction with a doctor led some to seek a second opinion or private care.

Jamie wants patients to know they can ask for a second opinion. She recognises that healthcare professionals sometimes make mistakes but being honest about it is important.

Amy saw an “unsympathetic” and unhelpful urogynaecologist. She asked to see someone else next time, but this didn’t happen. At the second appointment she felt that the specialist lacked knowledge about pessaries.

When treatments finished or did not work, some people we talked to felt unsure about next steps. Jan and Catherine had both improved from physiotherapy but, since these sessions ended, were unsure about where to go next. Sometimes healthcare professionals had told people to come back if they had any problems or if treatments didn’t help. But Eve worried about being “a bit of a nuisance” if she did go back, and Catherine felt it was “not necessarily that straightforward” to keep going back to her GP.

Booking appointments and waits

Some people we talked to had difficulty making appointments or calling healthcare services with questions. Amy and Chelsea had both tried calling their hospital clinics several times but got no answer or call backs. Sian heard nothing about a follow-up appointment for a long time and eventually found out that her consultant had left the hospital and her case had not been passed over to anyone else. Chelsea can book bladder instillations (a procedure where the bladder is filled with a solution and then drained) every 6 months but if it has been longer than 6 months she has to get her GP to re-refer her, which is a “complete and utter nightmare”.

Jackie’s GP surgery asks patients to call first thing in the morning for an appointment. This is tricky for her because pain from both her mesh injury and fibromyalgia means she sleeps poorly and is exhausted in the mornings.

Anna describes the challenges she faced recently when trying to get treatment from her GPs and was told to call 111 instead.

Talking about sensitive topics and symptoms could be uncomfortable especially if there was not a private space. This could be a concern when talking to pharmacists, with other patients/customers nearby, or when talking to GP receptionists. Jo, Elly and Jasmine said they found it embarrassing explaining their symptoms to the receptionist when asked why they needed an appointment.

Sharing details about personal health concerns with receptionists made Elly uncomfortable, especially as she sometimes saw them through her work.

Jasmine learnt a useful approach for talking to receptionists about concerns like thrush and UTIs, by describing them in broad terms as gynaecological or women’s health problems.

For Alice, using self-check in systems when she arrived for an appointment was difficult because she has an eye sight condition. She worried about not checking in properly. The waiting room was a long way away from staff, and there was no one there to ask for reassurance that she hadn’t missed her appointment slot.

After long waits to see a healthcare professional, getting to an appointment could be a big moment. Beth said it was reassuring to a step closer to things hopefully getting better. Some found that once ‘in’ the system of a specialist department, their experiences were good and they had access to helpful information and treatments. Iris was pleased when her consultant told her that she could access another appointment without a re-referral from her GP. He told her how “the system worked so that I could decide and use it for my benefit”.

Although she had had to wait a long time, Rosie was pleased with how her appointment went with a specialist and the follow-up.

Jessy, Minnie, Anna, Sarah, and others told us that it was often up to patients to follow up after appointments. Fiona understands that this might sometimes be because healthcare professionals are “overwhelmed” with the sheer number of patients. Elly said she was back and forth to the GP. Rebecca, who has chronic UTIs, didn’t “want to be that patient that’s always ringing up” but felt she had to, to make progress with her care. Iris explained, “if I feel like something is not right, I will keep going back to my healthcare provider and I will keep pushing”. Holly said, “I’ve had to be persistent; I’ve had to stand up for myself”.

Navigating healthcare services

Fran and others had been to a number of different healthcare services about their symptoms. Sometimes this was useful for gathering information and options, but it could feel like just being passed from one person to the next without any help. It could be especially frustrating when there were long waits for appointments.

Penny is sympathetic to GPs but says that it’s essential that patients get the help they need and feel supported.

Some felt that referrals and waiting lists for specialist services in secondary and tertiary care should be quicker and shorter. Others felt that they had moved too quickly through some services or ended up at services that they felt were not the right fit for them.

Vicky wished that she had stayed with her GP longer, rather than seeing a urogynaecologist, as she thinks her GP could have better identified the root cause of her bladder and urinary incontinence: “GPs come in for a lot of flak, I know, about menopause-related symptoms; my GPs have been excellent, they really have been good and it was purely by-, I’d like to think, mistake in a way that perhaps I was referred on when perhaps I didn’t need to be”. Amy, Phoebe, Jane and others felt that they had seen surgeons and had surgery suggested too quickly, without considering all of the options and working out their own preferences.

Leah feels that it required a “journey” to go through the different levels of care before she reached a specialist chronic UTI clinic.

Jacqueline describes the process of having a pessary inserted. She considered the process to be “painlessly intrusive”.

Healthcare services for urogynaecological symptoms could seem to be patchy, inconsistent, or unavailable. Whilst sometimes these services fit together and flowed well, people did not always find that this was the case. For Melanie, healthcare had been a “very long road of suffering”. Fran felt like she was going from “pillar to post”: “all they’re doing is pushing you from one department to another, wasting time, resources”. Some thought that problems were due to under-funding, for example Mehar said that “if the NHS had more money, I do believe they would do more than they’re currently doing”.

Laura, Felicity, and Leeanne, amongst others, felt that they themselves had to bridge gaps, for example, by organising and sharing information between different services and professionals. This could include trying both NHS and private routes at the same time, like Penny and Melanie.

Minnie was frustrated that the healthcare services which do her Botox bladder injections and the social care services which supply incontinence pads were not communicating with each other, leaving her “stuck” when symptoms worsened.

Laura was told at a private appointment that she might have endometriosis and ovarian cysts but there was no automatic entry into NHS services to follow up these concerns. This left her feeling that the NHS and private healthcare services and pathways were “disjointed”.

Leah and Clare worked in the NHS, and felt that knowing what to say to healthcare professionals and how healthcare services were set up had helped them to navigate their care. Leah worries for other people who may not be as knowledgeable about the system, as she has “struggled” despite working within the NHS.

Beth liked that her GP explained the stages of a referral and how she would hear about her appointment, which made the waiting process “easier”.

Vickie thinks more signposting about healthcare services, waiting lists, and possible treatments for prolapse would have been helpful early on.

María and Jasmine, who are not originally from the UK, had faced challenges with language and communication when seeking healthcare. María wondered whether, as an international student, she might be seen as “transient” by her GP, and whether this would impact on her care.

Mehar, Parminder and Alice had other health conditions which meant that they saw several different healthcare professionals, even though the conditions were sometimes related or interacted in some way. Alice, who is registered blind and has a hearing impairment, has had “lifelong and complex medical conditions” related to her face, jaw and head. She says she has always been “in and out of hospital”, which meant that her incontinence symptoms were often overshadowed by other concerns. Parminder was seen at different hospitals for different conditions and felt frustrated that “the NHS doesn’t work” in a way where “teams [are] working together on me”.

Alice found that complex medical conditions like the ones she experiences “don’t quite fit” into the model of adult health services.

Mehar has urinary incontinence, bladder pain and problems with UTIs, as well as other health conditions. She sees different specialists for these, and often feels caught “in the middle” of managing multiple health problems.