Jane Mervyn: A Deaf parent-to-be’s experience with the NHS and NCT

I am a profoundly deaf BSL user and I can lip read. My communication preference is my first language of BSL.

My husband is deaf and prefers to communicate either via speech or BSL. As deaf people we have our own communication needs which can be the norm for deaf people.

We started a new exciting journey when I became pregnant but we found it challenging dealing with NHS to ensure our communications needs were met for appointments related to the pregnancy.

We felt it was important to share our experiences with you so deaf people are encouraged to be more assertive about ensuring their communication needs are met.

Pregnancy and the NHS:

We are very thankful for the support of the NHS professionals we encountered during our pregnancy journey.

However, the NHS is a large organisation with thousands of staff who deal with a diverse range of people.

The vast majority of NHS staff may not have met a deaf person before and be aware of their communication needs. There may not be an overall awareness of equal access via BSL interpreters for appointments.

Communication Services:

Each hospital has an interpreter booking service which deals with requests from NHS staff for D/deaf patients whom use BSL.

Throughout our pregnancy we had to make requests with staff to ensure that BSL interpreters were booked.

In an ideal world, you would have the same staff member for midwife appointments but we learned you would be dealing with different midwives at various appointments.

Therefore we realised that we had to remind staff to book BSL interpreters until it became routine for staff to request BSL interpreters for the next appointments. Once staff were fully aware of our communication needs they reminded us that they would book an interpreter.

Sometimes, the Interpreter booking service would contact their own BSL interpreter in-house to see if they could take the booking for the next appointment. If not, then the Interpreter Service would outsource the BSL interpreter request to an agency with the NHS contract to ensure that the D/deaf patients BSL interpreter needs are met.

We would sometimes turn up for appointments and there would be no interpreter booked as there were none available – which we did not find out until we turned up at appointments.

This made it difficult for appointments if there were staff with different accents or speech patterns which impact on lip reading. It would mean my husband had to act as a communicator for me.

It is important that he wasn’t placed in that position and that I had full access to information translated by a fully qualified BSL interpreter.

My husband was at appointments as a parent to be to support me and to get information relating to the pregnancy. It is important that family members are not to be stand in BSL communicators.

At the appointment we were offered the opportunity to attend a NHS antenatal workshop and obviously we requested that BSL interpreters to be booked. Unfortunately the midwife stated that interpreters would not be provided at weekends.

We were disappointed and in disbelief about the limited accessibility and lack of awareness about equality access to allow us both as deaf parents to attend NHS antenatal classes to learn more about the pregnancy experiences. We both agreed that this matter need to be clarified with the midwife team, interpreting service and the NHS.

No interpreters – what to do next?

If the interpreter has not turned up, we decided it was important to complain about the lack of BSL interpreter for the appointment as this was not acceptable.

The appointment was inaccessible for us as D/deaf parents as to ensure we had the full information and to understand any of the answers to the questions we would like to ask. When there is no BSL interpreter available, this results in making the appointment much longer than usual.

Complaint:

Following the appointment, there were two issues for us to raise awareness about with the NHS, the lack of interpreter provision for the appointment and the lack of access to antenatal classes.

However we complained to the clinic receptionist but they confirmed that they did send out the request for a BSL interpreter for the appointment and that it was out of their hands.

Therefore we decided to contact the midwife team and interpreting service manager directly to inform them of the interpreter access issue for the appointment and antenatal class. If this matter was not dealt with properly then we would have to contact PALS.

A NHS Patient Advice and Liaison Service would investigate the issue further. Every complaint to PALS has to be signed off by the Hospital Trust Chief Executive. It is important to be assertive to ensure deaf people can get the service which meets their communication needs.

Response from NHS following complaint:

We heard back from the NHS Interpreting services and we were pleased to hear that BSL interpreters can be provided in the NHS classes at the weekends.

We both strongly felt that this should be made clear to staff so that they were aware for the Deaf patients right to communication access. We expressed our views to the NHS that there was a lack of awareness amongst staff and that this needed to be resolved.

Unfortunately it was too late for us both to attend the antenatal classes as we both agreed to look into the National Childbirth Trust (NCT) classes which will be discussed later.

Midwife teams

We have been working very closely with the midwife team who have been fantastic supporting us and ensuring we have the full access like any other expectant parents.

They have learnt so much from the access issues we have encountered and from the difficulties we experienced with interpreters, they became more proactive in supporting us both with ensuring the bookings requested are followed through.

We were pleased to see this increased awareness that will be beneficial for future deaf parents accessing antenatal services.

Planning for the birth and BSL interpreters:

We contacted the interpreting service office to sort out the preferred choice of BSL interpreters to be at the birthing centre for my labour.

The interpreting services do not realise that the Deaf community is very small, working with their BSL interpreter in a professional role.

We explained that it was not ideal to have BSL interpreters that we work with at health appointments due to wanting to have personal space for the pregnancy journey.

We had to explain that we do not have any issues with the BSL interpreter whom we work regularly, but that it would become too personal at the personal birthing experience.

We had to specify which BSL interpreters we would like to have during the labour time. All this takes time to be arranged and to be confirmed.

We liaised with the chosen interpreters for the birth to see if they were happy to be nominated and for their details to be provided to the NHS interpreting team.

We are now working closely with the birthing centre as we are due anytime. We requested a tour of the birthing centre at previous appointments with the midwife team at the beginning.

We were told to view the online video clip on their website which unfortunately did not have English subtitles, nor BSL translation but was accessible for other spoken languages.

We of course brought up the issue that the online video was inaccessible as they already provided other spoken languages and it did not make sense about the lack of subtitles for Deaf people.

We have contacted the media department at the hospital to raise this issue and told them they should have added the subtitle in every videos on their website. The midwife teams communicated with the birthing centre and we were offered a personal tour.

We met the birth centre midwife, whom was amazing showing around the centre and talked us through the birthing experience and planning ahead. We felt really reassured and happy with the professionalism.

We asked the midwife about her experience working with pregnant Deaf women at the birth centre. She stated that she has worked there over 10 years and there were none that she was aware of. We were amazed.

She gave us the text message number for us to contact when the contractions time has come, and asked us to provide information about how they can work with us and how can we work with them during the labour time.

They are keen to ensure our birth and labour journey is smooth as possible. We are looking forward to see what the experience will be like.

NHS / NCT

When we learnt we could not go to the NHS classes due no interpreters being provided at weekends at the time of the appointment, we decided to contact the NCT as we wanted to learn and be prepared as parents.

The NCT was very quick to reply and very happy to provide two BSL interpreters for the two NCT workshops, water birth class and six evening sessions that we have paid for.

We were so impressed with the NCT trainer who was facilitating the NCT course. She kept us informed and updated throughout the booking process with regards to the BSL interpreters.

The NCT had experienced difficulties in booking the BSL interpreters due to unavailability. They asked us to help to by giving a list of interpreters to contact. We worked together to source BSL interpreters for the NCT course. The team work approach was the best thing.

The NCT trainer made us aware that they had no knowledge as how to work with Deaf people and yet they were so honest and asked us for advice how to ensure the course meets our needs in a deaf friendly way so we can learn about being parents.

We have asked for permission to share this email which she first emailed us as we were both impressed with the professionalism and the willingness to learn. Here it is:

Dear Jane & Conor

My name is XXXXX, and I’ll be facilitating the NCT antenatal course on which you have places booked, starting on 3rd March. I saw on your booking notes that you are both profoundly deaf, so I wanted to make contact now and learn from you what would be most helpful in enabling you to have the best possible experience of the course, and make preparations accordingly.

There will be another 12 or 14 expectant parents on the course with you, and we do a mixture of whole-group discussion work, small group discussions and activities, and work in couples. We use white boards to write down and pool ideas, write on post-it notes, do card-match activities, look at images, diagrams and posters, and work with hands-on learning aids, as well as trying out physical skills for well-being in pregnancy, birth and parenting such as guided relaxation, breathing exercises, massage, and positions for labour. In light of all this, please could you tell me how you would like things to work for you, and what I can do to help you get the best from the course?

I had a few initial questions for you; please forgive me if they appear obvious, but I haven’t previously worked with profoundly deaf clients, so I want to inform myself as fully as I can about what works best for you:

* I noted that there is a BSL interpreter booked to attend with you. In terms of the role of the interpreter, would she be both translating what I and other group members say into BSL, and conveying your contributions to the group by speaking on behalf of one or both of you?
* Having one interpreter for 2 of you: It may be worth considering that sometimes we split into 2 groups, where all the pregnant women work together and all the birth partners work together, so in that case only one of you would have the use of the interpreter; would this be ok for you? Might you consider having a second interpreter?
* Do either or both of you lipread?
* When we sit as a whole group we usually form a circle of chairs; is this suitable for you? Is there is a particular position I should reserve for you and for your interpreter, for example you both directly across from me to facilitate lip-reading, with the interpreter next to me so you can see us both at the same time?
* I intend to ask the group if any of them happen to use BSL, and to let them know that a BSL interpreter will attend, as sometimes people are anxious about coming to the course and it’s helpful for them to know if there will be people in the group who are not expectant parents. Is this ok by you? Is there anything in particular it would be helpful for me to ask the group to do or consider that will help you during the sessions?
* Would you like me to email you a summary of the session content before each weekly session?

I hope this is all useful information, and that I’ve not burdened you with too many questions! Please don’t hesitate to get back in touch with any questions that you have for me.
I look forward to reading your responses, and to meeting you in a few weeks’ time.
Very best wishes,
XXXX

We have attended all the NCT sessions and we have thoroughly enjoyed learning so much. The NCT trainer ensured that everything she has provided was very informative and she used lots of visual resources that were aimed for all expectant parents.

The trainer read all the deaf awareness and working with BSL interpreters information we provided. She ensured that all parents were aware that they were on the same journey and encouraged communication.

She even asked us to bring the baby alerting equipment for Deaf so people can see what is suitable for us. This was beneficial to raise deaf awareness naturally.

It would be fantastic for a Deaf parents’ NCT course to be set up and as this would improve access. We would very much encourage deaf parents to sign up for NCT courses if they would like to learn more.

We gave our feedback to the NHS about how to improve service for deaf parents by increasing the awareness to ensure that the NHS is accessible for all Deaf patients.

If deaf people do not stand up for their communication rights, then no one else will do it for you. It is a lot of hard work but without giving the feedback then how will Deaf Awareness be increased?

We have learned that by making professionals more aware, they have become more proactive in making sure our needs are met.

Jane has been deaf since birth, she works as a BSL teacher at a deaf school. When she is not working, she is passionate about raising awareness for better access for deaf community.