Interview By Paul Whittaker
“Imagine if you’re going out and you are not understood, how does that impact on you as an individual? What changes your style of communication? What do you not say because it’s easier not to say it? It’s very much about that functional aspect of communication which is really a fundamental requirement for us as humans.”
Marie Pinkstone is a speech and language therapist. Based at Great Ormond Street Hospital (GOSH) since 2012 and part of the North Thames Cleft Palate Service, she became involved with CLEFT pretty much at it’s conception.
“When Brian [Sommerlad] shared with me that he would like a speech therapist to support the project, it seemed such a great opportunity and a really important project to be involved in.”
Having first visited Bangladesh almost 10 years ago, Marie returned with CLEFT and a team of medical professionals in February 2018 to see the new CLEFT centre in the Dhaka Medical College Hospital (DMCH). During their visit they conducted workshops, worked alongside their professional counterparts in DMCH, joined patient assessment clinics, and observed how the CLEFT centre could move forward in the future.
I spoke to Marie via Skype about her recent visit to Dhaka, to hear more about her experience, her work as a speech therapist, and to understand why speech therapy is so important within the treatment for children born with clefts.
Why did you want to get involved with this project? What was it about it that you found interesting?
Well, the key element from the CLEFT – Bridging the gap overseas work is that it is not a mission where you go in and the visiting team undertakes all the surgery and all the intervention and then walk away. The ethos that Brian and the charity have set-up as part of their remit is really to teach at a local level and that’s the part that really is significant for me so the skills that are shared and therefore you’re empowering both the next generation and the next group of speech and language therapists to treat the patients.
So tell me a little bit about this trip to Bangladesh, what was your aim before you went and did that change or did that evolve while you were there?
For me it was really to observe, to see what gaps there were, what are the training needs for both the speech therapy service and for others in the community. From a speech therapy perspective, how could we support the team going forward? But actually also to just embrace the change that had happened and just really to acknowledge the work that Papon and Lia and the team had undertaken and have continued to do. So really I was reviewing where we are and acknowledging the fantastic work that’s been done to date.
And so since [your first visit to Bangladesh], what changes and improvements have you seen, both in the conditions in the CLEFT centre in DMCH, and also in the services and the therapy that they can provide there?
Well now it’s absolutely like night and day. Before patients had to be referred out to a private speech and language therapist, and what was striking is that everyone was working in isolation. The consultant plastic surgeon would refer to the speech therapist but he really wouldn’t be bothered at all in what she was doing and he would then simply make the referral and he would leave everything to its own devices.
So having gone on that first visit, working very much in isolation, we have now moved to a really clear and established multi-disciplinary team including speech and language therapists who are perceived as being on a par with Papon and with the other surgical colleagues, and you cannot wish for more.
What were your first impressions this time when you first arrived into the CLEFT centre, into the ward, can you recall back what it was like in that moment?
Aw yes, definitely! I was absolutely blown away by the changes. Just the environment itself, it was bright, it was cheery. Just looking back on the first visit where the cleft children were just amongst all the burns patients and it was just a pediatric ward, but this was now the CLEFT ward.
And to see families working together, to see the nursing staff supporting them post-operatively, to see theatres just next door to the ward, it was just amazing. And to have Lia there doing her pre and post-operative assessments, supporting families and babies when they were having feeding difficulties…I think that will stay with me for a long time. It was just an honor to see and really testament to all the work that everyone has done along with the support that the charity has provided.
Can you tell me a little bit about Lia and what she’s doing in Dhaka and how you were worked with her during your stay?
So Lia was one of the students on the program [during my first visit] and I saw her a number of times when she was a student, and then we were very fortunate that CLEFT agreed to fund a speech and language therapist post and now she works solely for the centre. So she doesn’t have a private practice, she is committed to the cleft and craniofacial centre and from that we give her regular supervision, she gives her referral pattern and her numbers, she gives that to the charity so that they can see exactly what she’s providing. So the governance behind that role is really strongly established, and we feel that that’s very important, particularly when a charity is funding these positions.
And what’s Lia like as a person, how is she with the patients and with the other people in the hospital?
She is a complete joy to work with, she is committed, she understands and acknowledges boundaries, she asks for help and clarity when she needs it, and is working really hard in a very difficult and challenging environment. And having observed her she is highly regarded by the team around her and I think that’s fantastic.
You mentioned that she’s working in a difficult environment, in terms of the physical conditions what conditions or limitations does she face that maybe someone working, even in the NHS wouldn’t see?
What she has is the sheer volume of patients. The challenge she has of course is, they don’t have the follow up that we have here in the U.K, distances for families to travel are absolutely huge and a great challenge, and also people don’t see healthcare in the same way, so its about expectation and understanding.
Primarily if the lip is repaired then families might perceive that that’s all that needs to be done and might then disappear back to their communities. The fact that the palate is unrepaired will leave speech extremely vulnerable. And so sometimes we see adults who arrive with unrepaired palates, and it’s Lia’s responsibility to decide whether they need to have surgery or not and how that works and what will be the benefit because you want to make sure that when you do surgery that it has a benefit to the patient. So she has that challenge. She has follow-up to engage patients to return for therapy and also to link them in with specialties who she feels they may need such as audiology.
In terms of equipment does she have any restrictions on things that she might need that we would have here in the UK?
What she has used is we have an assessment called a GOS pass for children with cleft palate and or velopharyngeal dysfunction, that’s a long word and lots of words. It’s our screening assessment. And what Lia has done is taken that and produced a Bengali translation, so obviously it’s appropriate to the first language of her patients. And then all the standardized assessments we have here aren’t in Bengali so she then has to work from an informal assessment basis. So that’s challenging, you’ve got to get all those resources together.
And for you personally, why did you want to work with cleft patients in Bangladesh? Because as a speech therapist you work with lots of different conditions and you work primarily in England, so why did it feel important to help patients in Bangladesh with clefts?
Because I feel very privileged in the organisation I work in and within the NHS, It is challenging, I accept that, but overall everyone is working towards the same aim. It is the patient first and always. And to be able to share that ethos with others in a different country in a different continent in a different healthcare system, and to really support what is a fledgling profession to blossom and to have standing alongside surgeons etc, was just a challenge I could not walk past.
Is there something about children born with clefts that has a special connection for you or is it simply that they are people in need of speech therapy and that that alone in itself is the core reason?
Throughout my training I always had an interest in speech, because as a speech therapist you can work on language you can work on swallowing, on all sorts of areas of communication, but it was the actual process of speech itself and articulation that I always found fascinating. So I worked in all sorts of different areas but it was the fact that with clefts, after having surgical intervention we were able to change children’s speech, I think that that is absolutely the best job in the world. So to be able to do that and to be able to share those skills with others, I think is a privilege.
Tell me about the workshop that you did in the Hospital?
Ah the workshop…Well the ethos of the workshop is about training and supporting the local team and also establishing and sharing the importance of multi-disciplinary working.
And did you have a main goal or aim for what you wanted to give the students that you were doing the workshop with? Was there something you hoped they took away?
One of the key aims is to improve their listening so that they can hear the cleft-type errors in a child or an adult’s speech. Always with speech therapy there’s something called the differential diagnosis; what’s related to the primary condition, and then what is an artifact or related to something else. So it was really key that the students were able to hear the difference to be able to think about differential diagnosis, and also to map their transcription and their listening to the developmental profile of the child. So it was really about improving their listening and their interpretation for cleft speech.
And were there any moments or highlights from the workshops that you can remember?
Yeah the students are fantastic, they are engaged, they want to learn. we did a workshop on listening…and then we just talked, we had a sort of a Q and A, what would they like to know, what can we bring to them for discussion. And they talked about tele-health, such as this, Skype, or Facetime to treat patients, and they had some really innovative ideas that we must just allow and enable them to develop. Nearly everyone in Dhaka has a phone, so the speech therapists were moving away from you know, “Well I’m at my clinic and you come and see me”, it’s very much about, well let’s think about using technology to help us, let’s think about using telehealth in all of this. And they were very keen on improving their governance about their paperwork and their processes and their own development. So that’s about a profession that’s really wanting to move forward.
In terms of what Lia’s doing in the cleft centre now, for someone who doesn’t know about clefts, how is what Lia doing important within the treatment of a child with a cleft? And how is that making a difference in Bangladesh?
On many levels she is improving the care so she’s making sure that the babies, with their primary palates are able to feed, that those with problems are being supported, and making sure that they are fit for surgery, I mean that is really key. Making sure that they are well hydrated and have good nutrition because they are able to feed. And then she is post-operatively checking that the children are able to eat and drink, that’s fundamental, that’s what any mother wants to do for their baby at that early stage, and Lia facilitates that.
So imagine that you are on a maternity ward here in the U.K. and you have a baby who cannot feed, who has a different structural presentation, who looks different, and there’s a midwife and they’re not sure how to feed this baby, it’s really anxiety promoting and just a horrible experience. But Lia goes in to this environment and supports the families at this very early stage. And then as they develop their speech she keeps an eye on that, she listens to them, she then enables anyone who might need some support, working through the family to help that child’s speech. And she’s working towards the same aim as we are here in the U.K, that most children by the age of five will have normal speech. That’s what she’s working towards, that’s preparing a child for life. That’s a major component and a great part of her contribution.
If you don’t speak well that can sometimes impact on your literacy, it can impact on your ability to read, and all of those key things about your communication can be compromised.
From your observation and experience in Bangladesh, how has the funding and support from CLEFT provided better treatment for patients and for parents in Bangladesh?
It is absolutely fundamental to the success of the project. The money and the resources that it enables us to put in place ensures that we provide good quality care in a challenging environment. The links to GOSH and the North Thames team is key in making the clinical team feel supported and know that they have a lifeline out to us if there’s any challenges. But ultimately, to see the sign over the door that it’s the Cleft and Craniofacial centre supported by CLEFT- Bridging the Gap, was a really moving moment for me, to see it evolve into this. So it’s absolutely making fundamental changes and having a positive impact on children’s lives, and I would make a plea to everyone to please please keep supporting the project, because you are making a difference, and thank you.
Has your experience in Bangladesh affected the way you work in the U.K at all? Or has it had an impact on your approach to work or how you think about it?
It has absolutely, and one would be extremely … hard, if what you had seen out there did not affect you, and if it didn’t make you appreciate where you work within the U.K. I think all of us on the trip felt that we were making a difference in a very small way but we are all committed to the project in the longer term, we all see it’s value, and it makes us appreciate where we work. And yes there are challenges wherever you are but ultimately, we are very fortunate where we work and to provide healthcare in this environment.
That is a very different challenge to in Bangladesh, and I think on a personal level it makes you think, “How would i cope if this is it, all day, every day?”. Mindful of the heat, mindful of the politics, it makes you appreciate what you have here. You certainly come back to the NHS with different views. And I think most people in the NHS should have some form of exposure to working in developing country, and should take their skills out there, and teach.
Were there any patients that you saw or worked with that stuck in your mind?
There were two young women that we saw, they were at the start of their careers, about to finish school, and they were now preparing for life and they were wanting to make informed decisions about their treatment and they wanted to know what else was next for them if anything. And to see them come into this service, to see them be assessed and supported by Lia and Papon was … this is about engagement, and they were really engaged with the team, and asking us really good questions, and really challenging us, and they were great to see because they wanted to change their outcome, and that’s all you could ask for.
And that’s the reality, because it’s easy to think about the patients in Bangladesh as sort of, tragic figures, where anything would help, whereas actually these are just people who have aspirations and thoughts and plans the same as anyone else. You know, she’s fifteen, she’s just like every other fifteen year old and why just because you’re living in a developing country should your aspirations not be the same. You know, that’s about equality and that’s a big thing for me.
They can engage in the world and they can make their contribution, and isn’t that what every Mother or Father wants for their child? For them to be happy, and to make a contribution in whatever way they feel comfortable to do that. And that’s what speech gives you the ability to do.