Year Two (2019)
March 2018 saw the official start of CLAPA’s 3-year Adult Services Project. Read on to find out more about the project and how you can get involved.
Interested in what we did in Year One? Access the archive here.
What is it About?
There are an estimated 72,000 people over the age of 18 living in the United Kingdom who were born with a cleft. Historically, attention has been given to parents and families with young children to support them on their cleft journey. In more recent times, we have also seen a focus on older children, teenagers and young people. This work has proved incredibly valuable, however it is important that support is available for people beyond age 18. Understanding and supporting the unique needs and experiences of adults affected by cleft is very important to CLAPA.
From March 2018-February 2021, CLAPA is undertaking an exciting new project looking at improving services for adults who were born with a cleft.
This is a three year project funded by the VTCT Foundation, to research and understand the experiences, challenges and unmet needs of adults in the UK who were born with a cleft lip and/or palate (cleft). Much of this research was completed in 2018, and in 2019, the Adult Services Coordinator (ASC), Kenny Ardouin, and CLAPA staff team will work to report back on all the findings, and work alongside partners to develop and implement services designed to address current unmet need and roll these out across the UK in 2019 and 2020. At the conclusion of the three years, should the project prove successful, funding would be sought to continue the delivery of the services.
What we’ve done so far
Here’s a recap of some of the things that we did in 2018.
We undertook a massive survey of adults affected by cleft. Our Whole of Life survey asked adults who were born with a cleft about their thoughts and experiences on medical and health experiences, as well as emotional wellbeing, work experiences, bullying and discrimination, dating and intimacy, genetics etc. We are using the valuable information from this survey to help guide our future endeavours. Thank you to all those who participated in the survey.
We had the incredible opportunity to meet with many of you across the UK in the summer of 2018, and you told us what was important to you as an adult. We’re keeping this front and centre of our minds as we deliver on years two and three of this project. You can read the report here: www.clapa.com/roadshowreport. Do the findings resonate with you?
We also had a wonderful opportunity to meet with many of you once again at our annual Adults Conference on Saturday 17th November in London. This was a day that was directly informed by the roadshow, with the topics discussed being many of the ones that you told us were important to you.
The Second Year (2019/20)
In Year Two, we want to work closely with the NHS to continuing to develop services for adults, of course, within the resourcing constraints faced by both CLAPA and the NHS.
Reporting back to the community
Although we’ve already reported back on the roadshow and preliminary survey findings, we have a lot more detailed information from the survey yet to come.
We know that this information is of interest to different people for different reasons, and we aim to make it as accessible for everyone as we can. This will mean working with our colleagues at the Centre for Appearance Research to publish our findings in academic journals which the health professionals working in the field of cleft can access, presenting at cleft conferences, but also reporting back to the cleft community using plain English. Watch this space!
Striving to make referrals to the cleft team easier
We hear you. Making a referral to the cleft team can be really difficult for some. We want to make this easier for everyone.
We’ll be exploring options at how best to do this, but suspect it will be a multi-pronged approach of delivering information to the cleft community, encouraging NHS to accept self-referrals wherever possible, as well as providing education to GPs and General Dentists to help them to make the right referral, first time.
We are organising an exciting panel discussion event where we will be talking about a different topic each month with some members of the community who have lived with a cleft and a few specialists. This is your chance to get involved in the conversation and you can find out how to do so by following the link here.
Developing a Leavers Pack
We realised that many of you aren’t aware of what services are available, or what happens if you move to a different part of the UK or overseas. Let’s make that right.
CLAPA wants to work with the NHS cleft teams to develop a UK wide “Leavers Pack” which contains information about your access to treatment as an adult, a list of all the cleft teams across the UK, treatment options you may consider in adulthood, answers to commonly asked questions, a letter you can take to your GP to get a referral and more. A version would also be online which would be kept up to date.
Access to high quality information
You told us that you’re not fans of crystal ball gazing. Neither are we. You want access to high quality information that you can use to help you make those all important decisions. It is frustrating to be told one thing, only to have it contradicted by somebody else.
CLAPA will work with the NHS to develop some additional content for our website, including videos and panel discussions with those in the know. We will encourage primary health care providers (e.g. GPs, dentists, midwives etc.) to ensure that they are providing accurate information with regard to cleft.
Developing a register of dentists who understand cleft
Not many people like going to the dentist. However, many of you have told us that you are afraid of going to the dentist. That’s not a good situation and will likely impact negatively on your oral health in the long run.
There are many reasons why people feel this way, but the common denominator is that many dentists don’t understand some of the unique cleft related needs. We endeavour to develop (and update) a list of recommended dentists on our website who are recognised to have both experience working with cleft, and a genuine sense of empathy and understanding for people who are anxious about visiting the dentist.
Adult Representation Committee
We have a new group which provides advice to CLAPA on its adult direction, as well as being involved in external research opportunities. To find out more about this group, check out www.clapa.com/arc.
Continuation of the Peer Support service
You told us that having access to trained psychologists as part of the NHS is super important. You also told us that no-one quite gets it like someone who’s walked in your shoes. CLAPA’s peer support service has been around for a while and is one of our most valuable services for adults. We’ll be ensuring that you continue to have access to this vital service, and encouraging more people to volunteer their time as a peer supporter.
We’re excited to be holding another conference in the second half of 2019. The conference will be held in Glasgow. Check out www.clapa.com/ac2019 from mid-2019 for more information.
What do we hope to achieve?
In the second year, we hope to continue to develop our understanding of the experiences of adults with a cleft and report back on this. We endeavour to deliver on the goals above in the hope that it makes life that bit easier for those adults affected by cleft.
What can I do to help?
As an adult born with a cleft, there are a few things that you can do to help! We want to spread the word about the Adult Services Project as far and wide as we can, and there’s a few ways you can help us to do that:
- Let other adults with a cleft in your circles know about the project and what we’re up to this year – share our information about the project on social media, mention it to your GP and dentist, spread the word at your workplace, etc. Remember, since cleft affects around 1 in 700 people in the UK, chances are that everyone knows someone who knows someone with a cleft!
- If you’re considering or currently having further treatment, make sure your Cleft Team know about the project too. Feel free to mention it to them at your next appointment!
- Attend the Adults Cleft Conference in Glasgow.
- Consider joining the Adults Representation Committee.
- Join the CLAPA Community here (it’s free!)
Posters and Leaflets
Adults Project Leaflet (coming soon) – Leaflet with background of the project and its plans for the second year. You also can email us to request printed versions of this leaflet.
Get in Touch
If you would like more information or to share your ideas, please do get in touch. Also, keep watching this space for more updates!
CLAPA Adult Services Coordinator
Tel: 020 7833 4883
Email: [email protected]