This topic covers barriers to diagnosis, issues around accessing services due to transport, distance, or problems in making appointments; whether buildings and facilities are physically accessible; access to information in appropriate formats; and access to support services such as mental health supports.
Some women indicated that there was a delay in diagnosing their pregnancy and accessing maternity services, possibly because some health professionals tended to consider that the possibility of a pregnancy was remote.
'My local GP was actually treating me for gastro-enteritis and didn't think to ask was I pregnant or look for a urine sample or anything like that... so it was just by accident I kind of went in and said to myself well I'll take the pregnancy test and I'll see what happens and it came out positive then'. (P7)
Barriers to diagnosis of pregnancy emerged when women with a vision impairment were unable to see the indicator on the pregnancy test kit. They resorted to asking friends, acquaintances and partners to confirm the results for them, which in one case removed the spontaneity and surprise element of breaking the news to her partner and others.
'I bought a pregnancy test and ideally what I would have liked to do was do the test myself and then maybe take him [partner] out to dinner and tell him that it was positive. But I couldn't do that because my sight... I felt a bit, ah here I go again, I have to depend on somebody else and I wasn't telling anyone in the office, I didn't want to tell my family. ..so... he's reading the leaflet and going 'Is it plus or is it minus?' and I'm like 'I don't know.', I was getting all apprehensive and he's reading it and going 'I don't know, hang on, hang on.' and he read it and he goes 'No definitely you're pregnant.' and I went 'Jesus''. (V4)
For 2 women with an intellectual disability it was the social worker or a friend, not the woman, who noticed the signs of pregnancy and purchased a pregnancy kit which confirmed the pregnancy.
'A lot of people had noticed I had put on weight and my social worker bought me a pregnancy test and she said I was pregnant and I didn't believe it and then she brought me to the hospital and they did another test and they said, I think I was 4 weeks pregnant'. (ID1)'Well I went up to my friend and she took the test, the pregnancy test and that's how I found out I was pregnant then, with my friend...I told my boyfriend. He rang me and I told him that I was pregnant and he said, 'That's good.' I was very happy ... I was glad'. (ID2)
Correspondence with health professionals was generally in either verbal or written format or both, which made access problematic for women with a sensory impairment. Many health professionals appeared not to realise that sign language, not English or Irish, is the first language of people with a hearing impairment. 'Normal' correspondence would thus not necessarily be easily understood:
'The correspondence to the hospital was always by letter but I would open the letter and I wouldn't understand it so... we would bring the letter with us at our next appointment and the interpreter would translate it for us'. (H12)
Some GPs offered alternative, accessible forms of correspondence and this helped to restore the women's sense of independence.
'If I visit the doctor or the GP I use the fax, but I very rarely use mobile texting, mostly I use the fax'. (H8)'It's grand his (GP) nurse faxes me back'. (V14)
But generally alternative, accessible means of correspondence were rarely available.
'For 9 months of the pregnancy I didn't have any interpreter, it was just writing notes back and forth. I mean the doctor did try to tell me what was going on, but, you don't have an interpreter when you're with your GP'. (H1)
The issue of using a third party to correspond with health professionals and how this impacted on the right to confidentiality and privacy was also discussed.
'I got a letter that said, you need an appointment for a fetal assessment in gynae ward and I said 'What's that, what's gynae?', I never heard that word before...and you have to agree and I thought, 'Oh dear, I don't know what I'm agreeing to here.' so I got someone to ring for me, which means again, your privacy is completely compromised'. (H1)'It's a bit of a pain you can't do it [read the information] and then things aren't confidential'. (V14)
Accessibility to the maternity units was more difficult for women with a physical or sensory impairment who could not drive independently. Many relied on public transport or taxis when travelling to and from maternity services during pregnancy. Depending on the woman's geographic location and the availability of suitably adapted public transport, access to health care facilities was severely impacted upon for most, but not all, women.
'Getting taxis to go into town early in the morning is very difficult, not a lot of them will go in because a) they will get caught in traffic and b) they won't get a run to bring them out again. Buses ... were quite difficult, with schedules and things; I often missed appointments, early appointments due to traffic and different things like that'. (P7)'I just got a taxi and if I wanted to walk I could find my way there [maternity unit] myself and that was really useful and really important for me'. (V8)'I can't drive. Getting in and out and all of that was complicated'. (V10)
It appears that women with a disability may have several factors that lead them to be doubly disadvantaged when accessing maternity services as some of the women interviewed were single mothers, living in poverty, for whom paying taxi fares was a significant cost. Many of them lived in rural areas, poorly supplied by bus services. For one women with a physical disability and expecting twins, driving to and from the hospital for various appointments, which were not synchronised, was 'very difficult and tiring' (P17). For some of the women in the vision impaired strand, public transport services were inaccessible mainly because of their inability to see the bus and the inappropriate provision or scheduling of services:
'I did lobby for a bus, there is now a bus on my road, and there's a bus service which comes every half hour and goes back out every half hour, which is fantastic, but there's one problem - you have to be able to see the bus to flag it down'. (V3)
Many of the women were dependent on others, mainly partners, to transport them to the maternity units. Although the majority of women acknowledged that their partner wanted to be part of the experience, it necessitated them taking time off work. This may have resulted in annual leave being reduced thus impacting on the amount of support available to the woman when she went home after birth.
For the small number of women in the intellectual disability strand of the study, access to GP, social services and maternity unit were not viewed as problematic as all were local to them and they were supported by their houseparent to access the services.
'[The houseparent] brought me all the time'. (ID1)'[The houseparent] took me to the GP and [the hospital]'. (ID2)
A number of health and social care professionals displayed flexibility and visited the woman in her supported accommodation site.
'He [social worker] came out here [to supported accommodation house] to me'. (ID2)
One woman, who used a wheelchair, lived close to the maternity unit so it was agreed that all antenatal assessments would be conducted in the hospital rather than alternating GP and hospital as prescribed in the Mother and Infant Scheme. Some health professionals recognised the difficulties some of the women experienced in gaining access to treatment so they would call to the woman's own home.
'Our GP, he knows I'm visually impaired... he's the only doctor that would actually come to the house to us, if any kids were sick, anything he'll come straight out. But obviously the night that he's not on there isn't a hope of getting another doctor out to us'. (V6)
Getting to the maternity units and antenatal appointments was not the only difficulty experienced. For many women, accessing antenatal classes was also complex because of the physical structures, the location of the classes or whether a sign language interpreter was present or not.
'I couldn't go to antenatal classes because I couldn't drive and it was too far away, they didn't suit me so I never went to none of the classes at all'. (V11)'The midwifery manager wrote down on a piece of paper 'Why don't you go to the classes?' ... I said 'Yeah well there is a problem about me getting access. Like would you be willing to pay for an interpreter, provide the interpreter?' and she said 'Oh gosh no, we haven't talked about that. You have to pay for an interpreter''. (H11)
Getting to the local health centre and developmental clinics was a barrier experienced by some women with a physical and sensory impairment during early motherhood.
'The public health nurse said well you should come up to [name of local health centre] but again transport is a problem'. (P7)'We've no health centre, we've to go to [name of rural town] and that's 70 miles away'. (V6)
The public health nurses (PHNs) in some areas were aware of these difficulties and implemented measures to ameliorate them.
'She [PHN] actually came out to the house. I wanted to do things like massage classes with the baby, I wanted to go to a mother and baby group ... but instead they got somebody from family support down to me and I had a one-on-one'. (H5)'I suppose she [PHN] was good in that we didn't have to be going down to [the health centre] ... because ...the parking there is just crap, you know, for getting the little man out of ... his car seat, you just didn't have room to get yourself out of the car... so she was good, she came up and weighed him and that'. (P10)
For one woman in the vision impairment strand, attending some clinics was impossible. She gave the example of her 3-year old child[5] who was unable to avail of speech therapy sessions due to this problem:
'I can't, I've no way of getting to [name of rural town], it's 70 miles away, to get a bus to town... no problem, go to the health centre, do the speech therapy, but the bus coming back doesn't go from the health centre, it goes a half a mile down the road and it's a requested stop, so you have to put your hand out, I can't see the bus coming, so he doesn't get his speech therapy'. (V6)
Women from the sensory strands of the study indicated that it was difficult to make appointments during pregnancy. They were reliant and dependent on others, especially family members to contact and correspond with the maternity unit. The majority of women were contacted by telephone or in written format.
'It would have been nice to have a phone number that you can text so if I need to make appointments for the hospital.... I have to rely on [husband's name] for phone calls and that takes away a little bit of my independence and I want to be able to deal with a lot of things myself'. (H2)'I would tell my sister who has normal hearing to ring for me'. (H8)'My mum did [ring] once, which I wasn't comfortable with'. (H6)
Appointments scheduled early in the day were not easy to keep, due to the length of time it took to get organised in the morning and the difficulties noted above with transport. Those who tried to re-arrange a time that was more realistic and workable for them were sometimes met with inflexibility and a lack of sensitivity.
'I was kind of confronted with phone calls saying 'Well, why haven't you turned up and what is going on here and you've missed this appointment again, we can't keep re-scheduling?', that was the kind of attitude now no matter how many times you try and tell them look it is difficult to get in, you kind of met with a blank wall'. (P7)'I got a letter for the injections [immunisation programme for newborn] ... it was my GP I had to go for that and of course they only work 9.30 to 5.30, and the nurse only does the injections on certain days. So my husband ended up taking half days again to get the injections'. (V3)'I phoned ... said 'Look I'm really sorry but we missed the appointment. Can I have another appointment?'.... she [administrative staff in health centre] was like 'No, no, no we can't do that, there's not enough doctors.' and I said 'Look I'm really sorry, I'm blind, I couldn't read the letter, it wasn't in a format that I can access.' ... 'Okay well we'll definitely organise another one.' and I've heard nothing since'. (V8)
When women attended for antenatal appointments, the mechanism of calling them for their consultation was not suitable for those with sensory impairments. Women with a hearing impairment found it difficult to hear or determine when their name was being called.
'When we're sitting in a waiting room, we have our eyes on the person coming around and we lip read our own name'. (H1)'...so a couple of times I missed him [doctor] calling my name because he would open the door, stand in the door way and call my name, he wouldn't actually come out and look around the waiting room and call my name. I'd have to ask the person beside me, 'What name did he call?', 'Oh yeah that's me.' and then I'd jump up'. (H2)'I said to the woman [person at reception]... 'I want you to remember that I am deaf, so I want you to make sure that I get called in sequence, that I do get called, because it is going to be difficult for me, I won't hear my name''. (H11)'Mixed up, confusion, over here, over there... they'd say 'Sit over there.', then you'd sit over there, you have no information on what's happening, where you are in the queue, are you going to have to wait ... you don't hear your name being called, somebody taps you and says 'That's you.', ... and you go up and somebody ... says 'Go here.' or 'Go there.' or 'Do whatever.' and you do that and then they say 'Sit down again', so you sit down, you kind of just live from moment to moment and you're sitting in the hall'. (H10)
Women with a vision impairment found it hard to locate a seat or determine which room the health professionals were in, and this was more difficult for them if they were unaccompanied. This experience was not unique to the maternity units but was also experienced in the paediatric hospitals. However, for the women in the study, it was not an issue in the GP surgeries or community-based models of care.
'... [In] the waiting room you had to find a seat and to be honest without help, without sight assistance I would have found all this traumatic, extremely traumatic'. (V4)'... [A] big room...for a blind person that's really hard, it's like 'Take a seat.', 'Where?', all I can hear is this big massive room and I have no idea where the seats were'. (V8)
The time spent waiting to be called in for their consultation was more difficult for people with sensory impairments, as those with sight impairments could not read magazines while waiting and those with hearing impairments were afraid to read for fear of missing their names being called.
'I would never read a magazine, deaf people can never read a magazine in a waiting room like hearing people'. (H1)'I can't pass away the time the same way others might, others could sit there and read a book or do a crossword or something, I was just sitting there, I suppose that just makes the time go longer'. (V14)
Some of the midwives were sensitive to the difficulties women may experience and did intervene to minimise the effect.
'When I did go to the [antenatal] clinic the nurses knew me and knew I was deaf and they would walk over to me and say 'now' and indicate it was my turn'. (H9)'They [midwives] were actually quite nice, there was no, no horrible bad attitude at any time, they came to the door when they were calling you in there was no overhead beeper or anything'. (H6)
Some women, particularly those with a sensory or intellectual impairment, considered the time allocated to antenatal appointments too short, which prevented access to effective exchange of information.
'I always felt that they [doctors] rushed through it but it's probably just the normal in out, in out, but I actually stopped him and I said 'Look, I'm deaf. Can you just give me an extra 5 minutes? I'd be grateful because I need to lip read.' ... I didn't feel he was giving me 100% of what I was expecting of him'. (H2)'[I] thought they [doctors in maternity unit] were going too quick'. (ID2)
For women experiencing mental health difficulties attending appointments was challenging sometimes because of previous negative experience within the maternity services.
'...I had a fear going into the hospital [for appointments] because I had been in to have [name] and I had all this work done [talking about previous traumatic birth] so I thought it was going to be the same again'. (M11)
For others the impact of the mental health problem on self-esteem left women anxious and vulnerable about attending. This was exacerbated by the apparent lack of any structured appointment system or the presence of a friendly face to help women navigate the system.
'...[Be]cause I was explaining how hard it was even to go in for the appointment, that you know I wasn't even sure if I was going to make it in that day'. (M9)'Going public you're waiting a long time, you could be 2 hours waiting before you're seen'. (M12)'...Its just dog eat dog in there, there's no system, there's nobody telling you where you should be sitting or it's just mental in there, you know, people could be left sitting for hours and hours and then realise that they didn't report to the right nurses or knock on the right door'. (M1)
This woman goes on to describe an incident where someone jumps the queue and takes her place while she is waiting to see a member of the team involved in specialist maternal mental health service.
'So I'd to sit another hour and I went to the reception and I thought, I said 'That girl's after skipping the queue. She's after taking my appointment.', but anyway when I did get into him [psychiatrist] I wasn't fit for anything, to talk to him or anything, but that was the bedlam in that department...it doesn't do any pregnant women any good, because you're there too long, far too long, you know, for anything to be of any benefit to you'. (M1)
Some local health centres and paediatric hospitals were inaccessible for women with a sensory impairment.
'I hate the centre [local health centre], you go in, everybody is staring at you and you say who you are and who your baby's name is and they'll [PHNs] say 'one minute' and then they'll call you over here, and you don't know what's going to happen'. (H10)'At [name of paediatric hospital] ...it's only when I look around and notice nobody else is moving. I had to ask someone next to me 'Did they say [baby's name]?' and they said 'Yes you're right.' and then I go in'. (H5)
Some clinics outside of the maternity and paediatric services were not easily accessible to women with young children and their equipment. This, coupled with lack of child care facilities meant that this woman with mental health difficulties was unable to attend the psychiatrist and had not, 6 months later, been sent another appointment.
'And I did get an appointment for the outpatient clinic but I couldn't make it because I'd no one to take the kids and the place that I have to go is tiny and it's like a long narrow corridor where everybody sits and you just can't bring small children into it, can't get a buggy into it even. And I rang and I said 'Look I've no one to mind the kids. I'm not going to be able to make it.' and she just said 'Ah right that's fine.', that would have been the end of April and I haven't heard from them since'. (M7)
The design of the built environment was a key determinant of accessibility and impacted significantly on women in all strands of the study. Gaining access to the physical environment was a major challenge encountered by these women. For some, parking was an issue:
'Parking, I had to park in the disabled spot up the road at the [area on main street] and walk down to the hospital, there was high humidity that day and high humidity makes my [disability] worse and I had to walk up and back, it was the only parking space available'. (P17)'Parking in the [name of maternity unit] is a nightmare and there is a designated space but it's not policed and inevitably people park where they shouldn't'. (P5)
The women interviewed were complimentary of some recently constructed maternity units.
'The whole hospital was wheelchair friendly'. (P12)'There's a ramp, there's an automatic door so it senses the wheelchair coming to the door, which is great'. (P13)
For others, even gaining access through the front doors was difficult:
'Not all the entrance doors are ... automated, so that's difficult ... you're trying to balance yourself and try and get the door open... I had a number of appointments for early scans ... and that had a couple of steps down to it... my husband got me up and down in the wheelchair. So he basically pulled me and the chair up and down it. I was annoyed, I thought in this day and age there's no need for that and even if people had to get buggies up and down, it wasn't just me ...'. (P5)'The hospital is extremely inaccessible ...for people who are visually impaired or blind, the stairs are badly marked, the rooms and the signage is very bad, so I would always rely on [husband] going somewhere, going for a scan or whatever. Even all the signs up on the walls, which are important signs...you miss all of that when you're visually impaired'. (V9)'They have shoved the maternity section out into an outbuilding ... and it's really, it's not nice at all. You kind of go up a ramp so you do, and this is inside the building, but there's a big set of very big steps when you come back, when you're coming back out of the consultant's room, they're very steep and some of them are not even marked'. (V12)
Once access was gained the challenges continued with the units' interior structures. Health care facilities and physicians' offices were difficult to access for the majority of women with a physical or sensory disability. Women described the environment as cold and unwelcoming, negotiated and navigated only with the assistance of others, mainly family members and occasionally health professionals.
'I would have to ask [for assistance], even though I had my fiancé with me I still had to ask. They [midwives] were good enough to help me, there was no, there was no objections not to help me'. (V4)'I'd have to have one of the porters push me down [to the antenatal clinic]'. (P13)'... My husband was with me ... the obstetrician actually had become really quite aware so that was the only time and he actually guided me to the seat which was great'. (V8)'I'm not dependent by nature, but because when I go back into the maternity, it's unfamiliar territory again, I have to go dependent on someone'. (V9)
Women rarely attended the maternity unit alone.
'[The houseparent] had taken me to all my hospital appointments'. (ID1)
One woman who did attend the maternity unit alone said she felt '...very vulnerable now when I was there on my own'. (V10). The reception area and corridors were described as unwelcoming:
'I had to talk to a woman in a booth [reception desk] and that was a nightmare because she was quite short and her mouth was covered by the opening of the booth ... I was distraught anyway, that was horrible because I just couldn't hear anything she was saying to me'. (H5)'The narrow corridor for someone with a crutch ... some people wouldn't get out of your way and that was hard to negotiate but in hindsight [name of maternity unit] wasn't for somebody with any disabilities or with any movement problems'. (P10)'It's a really steep ramp, and when I go down there then [antenatal clinic], it's a tight little space down there to get through, there's lots of chairs in the corridor, the main reception ...it's high, so I have to lean over to show my hand, but other than that they wouldn't see me. I wave, or I cough, I normally cough, 'Hello, I'm here''. (P13)
One woman with a physical disability was admitted to the antenatal ward during her pregnancy and found it to be very large, which posed difficulties for her when moving around.
'It was a big ward but I found it difficult to get around for the simple reason that I had no crutches with me and I had to keep asking for a wheelchair and even then there seemed to be only one on the floor and every time I turned my back somebody had taken it for somebody else to go down to the labour ward...it was kind of annoying that I had to call a nurse every time I wanted to go to the toilet'. (P5)
Using bathroom facilities independently was challenging particularly as some maternity units did not have wheelchair-accessible toilets. Arrangements were made to accommodate one wheelchair-user but these arrangements were different to those of the general population and only served to highlight the woman's disability:
'They give me a couple of bottles [to collect a urine sample] every time I leave and I bring a sample in with me. You should have the option to do what the other mums are doing, you're standing out if you don't, you're something different, you know, the other mums just do it, I'm taking mine in my bag and handing it in'. (P13)
Orientation and navigation around the maternity units was difficult for women with a vision impairment. The lack of appropriate signs compounded the difficulties even further.
'Signs obviously you wouldn't read, unless you asked somebody you know they're not going to kind of go around and read all the signs for you'. (V14)'I kind of go to the security guard at the desk and kind of ask that person and sometimes they do point to signs and I kind of go 'Well, could you just tell me' or whatever. I can read signs but I'd literally have to be up right under them and practically touching them and at that stage you kind of know where you are...'. (V2)
'I just couldn't find my way around because you've to go one place for bloods and you've to go one place to be weighed and then you've to go another place to see a doctor and ... I found it all confusing. Then I had to go downstairs for a scan, they knew I was visually impaired because it was on my file but there was never anybody offered'. (V6)
Lighting was also an issue that added to the functional nature of the building.
'The lighting is always neon, it's cold lighting ... there's always streams of people moving...queues forming here, there...numbers being called ...it just gives this impression of people being passed...it's impersonal. Once you're actually dealing with a midwife, a doctor they're very nice, but the building itself is functional and you're there for something really personal and really joyful and it just clashes with that'. (V17)
Many of the women discussed how busy and crowded the maternity units were. The volume of persons within the unit made navigating the physical environment difficult. In addition the long waiting times were exhausting and difficult to tolerate. Some found the experience traumatic and likened it to being herded like 'cattle' (V14 and V19).
'The maternity itself is a horrible building, it's just a very, very old building... it's too crowded. It's like going down into the dungeons, going down to where the scanning and all that is'. (V10)'The clinics are not in any way shape or form set up. You have a kind of production line. You can certainly get in the door but it's not very easy, these things certainly haven't been thought of really well'. (P8)'There was queues out the door... and I was like, oh my God, we had to get through admissions to get onto the other queue, I couldn't believe it, I could hardly stand. Eventually ... I did stay standing and got to the...check in desk and then I was just joining the next queue and there was some steps, it doesn't look like anything to most people, but I was like, oh God, oh God, I can't and there's no handrails on those steps, and there's usually a pram parked or there's somebody who won't get out of your way, and it's just, oh, it's such a nightmare, it really was'. (P10)'So I queued ... I found that very, very stressing and the amount of people there, found the whole place, couldn't cope, too big, no sign posts and especially when nobody was expecting me and no file on me, nothing, the whole experience was horrible'. (V6)
When one woman with a physical disability was asked to retain and carry her maternity notes, a policy practised in some maternity units, she found it physically difficult.
'You had to bring your folder with you each time you were in and out, and it was like, crutch, and handbag, well, okay ... your balance is, you're kind of used to handbag and crutch but the folder as well was kind of, too much'. (P10)
The physical environment of some postnatal wards generated a lot of discussion. The majority of women indicated that the wards were generally inaccessible. One woman with a physical disability described her postnatal experience, as a consequence of the inaccessibility of her environment, thus:
'I just felt like oh my God I felt so, so alone and isolated like'. (P2)
One woman with a vision impairment had difficulty determining who had entered the room because people would come in unannounced. To overcome this problem her GP advised her to put a note on the door to say she was blind but the woman did not agree with this advertisement of her disability. It was difficult for women with a visual impairment to navigate large open units and communicating for women with a hearing impairment was very challenging. In contrast, in cramped, enclosed wards the space to accommodate additional equipment was limited.
'I found it very, very stressful because the wards are so big and everything is so open'. (V4)'What I couldn't see was things like drinking water or bells or lights or getting round the bed and the ward itself where the sink was because it was very small'. (V9)'I just hated every minute of it. It was so cramped... I actually got a corner. I got a window. So I had an extra bit of a ledge. None of the other women, they literally had bed, cot, bed, cot, bed, cot that was it. We were milled in. We were like rats in there'. (P2)'It was the ward that they put you into after caesarean section, so I didn't get any sleep at all, so I tried to explain to them (midwives] that sleep was really, really important for somebody with [disability] and that I needed either to go home or to be given a private room'. (P3)
However, small enclosed spaces helped to ameliorate some of the acoustic challenges encountered by women with a hearing impairment.
'It was such a small enclosed area that the acoustics of the room were easy to hear what the person was saying'. (H5)
Sometimes women were allocated to an unsuitable area and, in one instance, it was the woman's partner who identified the inappropriateness of this.
'They put me into a room with 6 beds and I was in the middle on the opposite side to where the bathroom was. My partner went up and explained that was going to be awkward for me so they did switch the beds so I was next to the bathroom which made it easier'. (V14)
Women were more comfortable when they were aware of their surroundings but they were rarely orientated to their new environment.
'The notices were written up that people had to wash their hands before they held a child ... nobody said that to me. Nobody said to me that these are the lights, this is the bell, none of that was kind of relayed on to me. So you just had to find things for yourself'. (V9)'I wanted a shower and I hadn't a clue where the showers were and the midwife said it's ... just down there, so you're kind of wandering looking for the showers and they're not signposted, toilet or shower or whatever'. (P10)
Similar experiences arose around mealtimes.
'When dinner and food were coming around, they [catering staff] were saying 'You go over there to eat.' Where is over there, like where do I [go]?, I would rather starve. I had no dog, I had no cane, when somebody would come in, I didn't know if they were talking to me or the woman next door in the next kind of curtain separating us, they are saying 'Are you alright?' and I'm going em 'Yeah.' and they weren't even talking to me at all'. (V5)
Some women with a vision impairment were conscious of the various appliances and equipment that resided in and sometimes cluttered their surroundings and environments.
'One thing that they've [household staff] an awful habit of doing, is leaving wires running across the floors, you're here feeding your baby ... they're dynamite. They're washing floors, hoovers, there's wires going across and they're the things that I do fall over, equipment being just left everywhere, that's very difficult'. (V6)
Bathroom and showering facilities in some postnatal wards were deemed to be inaccessible by the majority of women with a physical disability. Many women were unable to shower independently and some got their partner to accompany them to the shower/bathroom.
'I couldn't have a shower for the time I was there [in postnatal ward] it was not accessible'. (P2)'I had to get [partner's name] to come into the shower with me because you have to step up into the shower. There wasn't the staff there [in postnatal ward] to accompany me into the shower. (P9)
There were no facilities to sit down or feel secure in the shower and no help was offered.
'[The] first shower I remember, you're really wobbly and all you need is a seat and handrails and when I saw the shower I was like, oh my God, there is no handrail, there is no seat, there isn't even a place to put your shower gels and stuff, you had to pick things off the floor and that's a no, no... you just can't do it, you could be on the floor quicker than you realise...getting back to bed was, it was like you're really drunk and you're just looking for a wall to fall against. So I got back and I just lay down for ages, but at no point was there any offers of help'. (P10)'The bathrooms were very small. I had to hop off the wheelchair and kind of crawl into the bathroom on my hands and knees. The wheelchair would be just outside the bathroom'. (P12)
Women encountered many challenges during pregnancy, childbirth and early motherhood when using equipment, particularly equipment that was fixed and not adjustable. Many relied on health professionals to help overcome the challenges. Some women experienced a lack of willingness, manpower and suitable equipment to help transfer them safely onto the examination couch. One woman with a physical disability even contemplated taking her own equipment with her when she went into labour.
'One of the biggest problems I had ... was having to climb up [on examination bed], I mean it's difficult enough when you are not pregnant to get from a wheelchair into something like that but, it's very often impossible. But certainly add the baby weight onto it, it's basically nuts. But yet I would have to get up and down off these things because they didn't have adjustable beds'. (P8)'I have a special chair at home that I put into the bath and it's remote control so it lowers me up and down in the bath...and it's lightweight, so we were thinking when I go into labour to bring that up with me. You shouldn't have to bring your own stuff from your own home in'. (P13)'They [antenatal classes] wouldn't be accessible to me because I wouldn't be able to get on mats so I wasn't offered any antenatal classes. I would have liked to have done them if I had the opportunity'. (P5)
Some equipment in the delivery suite was described as inaccessible and a hoist to aid transfer and positioning was not always available. Some delivery suites were perceived as being ill prepared for women with a physical disability.
'The only thing would have been stepping up and down on to the bed, it felt very high and I was afraid with the pain that I, just felt that I might fall off'. (P6)
For women with a hearing impairment, who could not hear the baby's heart-beat on the cardiotocography machine, the midwives and obstetricians were conscious of the need to reassure the woman about the baby's well-being. So they used non-verbal methods of communication to affirm that all was normal.
'They [midwives] turn it up [cardiotocography] so you can hear it [baby's heartbeat] and going thumbs up'. (H14)
Women recalled how the equipment was generally inaccessible in some postnatal wards. Maternal beds were inaccessible and difficult to negotiate.
'I slept most of the time in an armchair, I set it up so I could sleep in the armchair rather than the bed because it was just too difficult getting in and out of the bed'. (P5)
Sometimes bells were not functioning and a few mothers found that baby cots and incubators were too high and inaccessible. This rendered it difficult for some new mothers to lift their babies out for feeding or cuddling.
'I'm in agony and ringing the bell, my bell doesn't work I got the only bell in the place that didn't work...I'm ringing and ringing and I had to get the girl beside me to ring her bell... everyone else was getting out of the bed and they were lifting their babies and I'm... looking at my little fella in through this gold fish bowl and I'm like 'I can't get you son.''. (P2)'The only difficulty was that the buttons [to gain entry] were too high up, I wasn't able to stretch. I would have to have someone with me all the time when I would go up to see [baby's name]...and...the incubators were high...I would have to stretch to see him'. (P12)'I couldn't use that [baby cot]; I couldn't use it at all. To lift the baby out was far too difficult'. (P8)'I wasn't able, there was no way I could change [name of baby] of even get her out of the little cribs, I just wasn't able to do it'. (P18)
For others the baby cots posed no issues.
'The cots were ok. They've wheels on them...so they were actually quite good'. (P7)
Some midwives did attempt to address the issue of an inaccessible baby cot, which was appreciated by the women.
'One midwife said to me there has to be something better than that cot ... and she caught something in the antenatal they screw onto the side of the bed ... It looked like a mad yoke, it was just like 2 bars and then a space right ... next of all the cot is getting closer and closer to the bed ... I was able to grab [name of baby] by the shoulders and drag him onto my bed'. (P2)
Parents sourced practical aids and equipment to facilitate parenting skills from health professionals, usually the public health nurse (PHN) and/or voluntary organisations and agencies.
'If I need anything [aids for parenting] I've gone to her [PHN] for them. I've used her [PHN] department for other aids and appliances'. (P2)'I knew about the alarm [baby alarm for hearing impaired women] and I had to get a friend to go to the National Association for the Deaf to get a form for me to fill out, she had to bring it back to the hospital for me to fill in and then she had to bring it back to the National Association for the Deaf, they gave her the alarm and she gave it to me, it would have been nice to actually have that form in the hospital with a lot of other information'. (H2)'I had this little silent alert thing to wake me up but...it was difficult'. (H1)
For women in the hearing impairment strand, contacting the emergency services was very challenging, which meant that they were not freely accessible to them. They relied on friends, family or neighbours to contact the emergency services and when they did these persons were often unable to answer some of the questions posed.
'My husband translated for the paramedics'. (H12)'We rely on a neighbour to phone, or a member of our family. The services [emergency services] don't have a text message service. My sister-in-law rang 999 and there were a few questions on the phone about the address and why and where and what was going on'. (H9)
When the emergency service personnel could communicate in an appropriate format the woman was very appreciative.
'The ambulance man could do the signing, good night and goodbye, and he was great'. (H9)
Forward planning was therefore essential.
'He [husband] found someone who was reliable and he took their number and he arranged that he would send a text message and then they would ring the ambulance'. (H12)
Women who were attending one maternity unit where there was a specialist mental health service located on site reported very little difficulty in access, as the service appeared to be proactive in referring women and was very responsive in terms of appointments. The service involved having direct access to a support midwife with expertise in mental health and a perinatal psychiatrist. The aim of the service is to develop a strategy for the prevention, early detection and management of perinatal mental health problems and postnatal depression. This includes identifying a population at risk, facilitating appropriate support and accessing a range of services for them. Team members also act as advocates for vulnerable and depressed women to ensure their needs are addressed, provide educational programmes for professional disciplines who provide care for this group and actively participate in research to enhance the mental health service. An information leaflet on the 'support midwife service' is given to all mothers who state that they have a history of anxiety and/or depression at their booking visit. This enables women to think about their needs and ring directly for an appointment at a time that suits them. Referrals are made by other health professionals also. Support and information is provided by telephone when appointments are not practical and specific problems need to be dealt with quickly. In the hospital, the Edinburgh Postnatal Depression Scale (EPDS) testing is offered to all mothers on day of discharge from hospital. The public health nurse and GP are informed of the score via the hospital discharge liaison sheet or by phone where necessary.
One woman, in her second pregnancy, accessed this specialist service for women with mental health difficulties. A plan to reduce possible trauma around childbirth had been agreed in partnership with the woman.
'I saw [specialist support midwife] about 2 weeks beforehand and we went over the plan [agreed plan of care] again and she said 'Yes everything should be all in order. It's on target to happen the way it's supposed to.'' (M15 (2nd interview))
Another woman (M2) who had experienced postnatal traumatic stress disorder (PTSD) following the birth of her first baby was currently pregnant and was referred, at the first antenatal booking visit, to the specialist mental health services for help and support with her mental health difficulties. She had appointments with the psychiatrist and support midwife, and was given information and counselling for PTSD. As a result, the remainder of her pregnancy was enjoyable. Other women also appreciated the service and highlighted the importance of having specialist services to provide support and information on perinatal mental health issues:
'I was asked if I'd like to talk to someone so I said 'Yes.' so [name] is the midwife [support midwife]... fantastic, from the time I went to see her things got a lot easier, you know. I went to see her before the structural scan at 20 weeks and she was great, she helped me cope with what I was feeling and you know saying things that you are afraid to say'. (M5)'I was roaring crying. I was in an awful state, thinking, I felt so bad and yet I was afraid to take medication in case it hurt the baby. And she [GP] reassured me that it wouldn't, that I needed it, and she rang the [hospital] as I sat there and asked for the support services and the [name of specialist maternity service] rang me the next day with an appointment...[Name of support midwife] she visited me in hospital every day I was in there, for a chat. She was very good yeah'. (M6)
The benefit of access to specialist care and getting support and help, either within the maternity services or postnatally within the mental health services when experiencing mental health difficulties, was considerable. This woman, commenting on the specialist service with the maternity care services, said:
'You're never left waiting more than a week, which is very, very good and very, very important, it's just, yeah, it was a saving grace, because I don't know what state of mind I'd be in now if I hadn't...for the first time I'm actually feeling back to my normal self in a long, long time. And I'm absolutely terrified I'm going to go through the whole lot again now after the birth, so, but they won't let that happen they said'. (M8)
Another woman commented on a specialist postnatal service that she was attending with a mental health service:
'She [name of mental health nurse] came once a week, maybe twice some weeks, ...I don't know where I would have been without her...honestly if I hadn't had [name] through the pregnancy I don't think I'd be here, I don't know to be honest what way I would have been, if I hadn't had [name]'. (M11)
For many women where there was no specialist mental health service within the maternity service their experience of trying to get help for their mental health difficulty was not positive. They reported difficulty in accessing support, with a sense that they were hostage to the fragmentation and lack of integration between maternity care and mental health services.
'I fell between the stools, the maternity service washed their hands and said well we're not dealing with it because it's a mental health issue, mental health were saying we're not dealing with it, she's pregnant... I mean the funny thing is, just in a nutshell, they can whip me in with the [names another physical health issue] but they can leave me out there with a severe mental health issue'. (M10)'They [maternity services] didn't offer me anything ...as far as I was aware there wasn't anything to offer...I think they just kind of thought...ah well if you're being seen by the psychiatric services then we don't need to do anything...I mean I don't know if the maternity services do offer any sort of support'. (M7)'I found though the maternity services didn't really tend to take into account the bi-polar, so they weren't as supportive as they could have been...on one hand you had, I suppose, over-caring from the mental health and then non-caring from the maternity, maternity was just concerned with the pregnancy and the baby'. (M18)
In the absence of specialist mental health services within the maternity services, women were left to try and seek support from GPs and mainstream mental health services. In some situations the women did receive support as highlighted by this woman:
'... When I was trying for this baby she [psychiatrist] spoke to me and she said 'As soon as you find out you've conceived you must let us know in here.' [psychiatric services] ... she reassured me that [postnatal depression and psychiatric hospital admission] is not gonna happen again and they're gonna do out some working plan or something, ... I just feel I've got the support here [mental health resource centre], I think that's why I'm not worrying. I didn't have that support the last time because I didn't know it existed'. (M14)
However, for others, support was not as forthcoming:
'No wonder people suffer because when you openly ask for help from your GP and they don't recommend things, you know it's very disappointing... I had to do my own research into alternative health, I couldn't find anything, the GPs don't recognise alternative health either. I told him I was going to a hypnotherapist when I was pregnant, just to see if it would help and he was like 'Yeah whatever' (laugh) 'away with you'. But he'd never suggest the name of a counsellor or someone to go to talk to ... I think the GPs need to maybe have a list that they can refer you on to people or the mental health service needs to advertise more, publish 'If you need help please contact us and we can arrange counselling.' and that'. (M9)
Another woman who was experiencing extreme stress and asked her GP for help recounts her experience:
'And I thought 'What's this stress doing to the baby?' and I went to the GP for help and he looked at me and he said 'I don't sleep either.' and dismissed it. He said 'You've a perfectly healthy pregnancy; I'm not prepared to give you any more support'. And I said, 'I think this is ...becoming a much more severe difficulty''. (M10)
When this woman went to the antenatal clinic to get help and support, she described her experiences as follows:
'I... went back and I said 'Look, I need some help here.', and ... I was referred to [name of psychiatric hospital] and ... basically they said 'We can't give you any medication because you're pregnant and we're just going to send you home. We'll try and get you some psychology in a week.'... but they couldn't get anything that day and I needed something that day, I was exhausted'. (M10)
Her meeting with the psychiatrist did not provide the support she needed.
'The consultant muttered something to me about 'Do you ever have bad thoughts?', and I looked at him and I said 'No, I don't have suicidal ideation, no, not at all.'... I was beginning to think at the end that maybe I should have made up something so that they would have done something'. (M10)
Because of the difficulty in accessing services this woman moved back to England for 4 months.
'We really moved lock, stock and barrel because the service was so poor and they were just refusing to understand me. I felt there was a whole stigma around the fact that I wanted medication but I was reading books that said if the woman is stressed medication should be used'. (M10)
Another woman tried to get support from her GP for mental health issues and described feeling
'Isolated and ... a little bit kind of shoved into a corner ...a little bit forgotten about really'. (M7)
She the contacted the mainstream mental health services and was commenced on medication, but no in-depth psychological support services were offered:
'They started me on the [name of medications] and I don't know, I think things had gone kind of too far at that stage for to just pick up and you know pretty much through the rest of the pregnancy like things weren't great...'. (M7)
In this chapter the women's experiences of accessing maternity services were presented, and illustrated a number of challenges. The main areas identified by the women related to the barriers to diagnosing pregnancy including possible misdiagnosis by professionals; the limited availability of information for some women in accessible and confidential formats; and issues with making and accessing appointments at midwifery and specialist mental health services. Structural environmental issues were also highlighted in terms of inhibiting physical layouts, navigating around units, accessing transport, utilising equipment and women with physical disability managing their own notes. For women with a hearing impairment, the emergency services were not really accessible as contacting them was very challenging. The benefit of being in the right part of the country to access specialist mental health services, and getting the necessary support and help when experiencing mental health difficulties was considerable, but was available to few women.
[5] This woman was included in the study because of a subsequent birth that met the entry criteria, but in interview did refer back to her experiences with all her children