If you’re over 18, it is possible that the care you received when you were younger was different to what children can expect today.
Many adults praise the care they received as children, but there are also some who suffer from sub-standard repair surgery, missing teeth, unclear speech or other ongoing issues as a result of not getting the treatment they might need.
Some adults with a cleft find that their regular healthcare providers such as GPs and dentists are not always fully aware of the issues surrounding cleft lip and palate, or of the treatment options that are now available on the NHS.
“Any adult who has missed out on the care pathway should be assessed and treated according to the Clinical Service Specification in so far as that is clinically possible and appropriate regardless of age, according to clinical need and in an appropriate environment.”
Although in the current system the specialist care pathway ends at 16-20 years of age, treatment needs don’t always end here. Adults who are interested in receiving further treatment on the NHS should be able to access specialist cleft services at any point, regardless of age or whether or not they have gone through the existing care pathway.
If you are considering any further treatment, surgical or otherwise, your local Cleft Team are the best people to talk to. Not only will private treatment be significantly more expensive than NHS treatment (which will usually be free for issues caused by cleft), but you are also unlikely to get a cleft specialist. Your cleft is as unique as you are, and the specialists with the Cleft Teams will be able to give you the best idea of what kinds of treatment are realistic and appropriate for you.
Sometimes a treatment can affect you in ways you might not anticipate. For example, jaw surgery may change how you sound, and these changes may persist even after Speech and Language Therapy. The specialists in your Cleft Team will all work together to ensure changes like this are monitored and managed, but it’s important to take time to understand any risks.
“When I was discharged nobody ever mentioned that I could ask for or have further treatment in future, I thought I had had all the treatment I was ever going to get and that I just had to live with how I looked.”
– Adult with a cleft
If you are still suffering from serious problems to do with your cleft, such as holes in your palate (palatal fistulae) or eating/breathing difficulties, it’s never too late to seek treatment. Talk to your GP or dentist and get a referral to your Cleft Team today to see what can be done.
What to consider when thinking about further treatment
What are you hoping will change? What is the single most important outcome for you? Have you considered how long the treatment itself will take, including preparation and recovery? What about the risks involved and any potential side effects?
It can be tempting to see surgery in particular as a fix-all for certain issues, but having realistic goals is important. All treatments carry risks that must be carefully considered, even if the biggest risk is feeling disappointed with the results.
The Clinical Psychologist at your local Cleft Centre can help you to talk through your desires and expectations for treatment, surgical or otherwise, and see if this is the right path for you. They might arrange appointments for you with other members of the Cleft Team, or refer you to another service which can provide more appropriate and/or local support. It could be that they help you decide that you don’t want to pursue further treatment after all – it depends on your personal situation.
It’s a good idea to write down any questions you have before medical appointments, and take the time to make sure you get answers. It can also be helpful to take notes during appointments so you can refer back to these if you need to clarify anything later on.
You may want to talk to other adults who have had similar experiences to get a patient’s point of view before taking things further. CLAPA’s Peer Supporters are adults with a cleft who have been trained to support others one-on-one, and they would be happy to help you talk through any issues you’re having.
Please note: This page is only intended to give you an overview of what is available to help you make an informed decision that’s right for you as an individual – it is not a recommendation or endorsement of further treatment.
Available treatment may include…
- Speech and Language assessment and therapy
- Lip and/or nose revisional surgery
- Speech surgery (or ‘velopharyngeal’ surgery)
- Palatal fistula (hole in palate) repair
- Orthodontic work
- Alveolar Bone Graft
- Orthognathic (jaw) Surgery
- Clinical Psychology
- Hearing assessment and treatment
- Restorative Dentistry
The Covid-19 pandemic has caused significant disruption to NHS services which has impacted on cleft care for adults. Areas of the UK have been affected in different ways, so some cleft services are almost back to normal, but others are still experiencing delays.
Despite this disruption, adults born with a cleft are still entitled to advice and treatment under the NHS.
If you would like to talk through your treatment options and see what is available, you should request a referral from your GP to your local NHS cleft service. The cleft service will be in contact with you to arrange an initial appointment as soon as they can.
This may take longer than usual, and there may be further delays before you can access treatment or surgery, but it is still worthwhile to get a referral as soon as possible to talk through your options. Once you are under their care, the cleft service should keep you updated about when you can expect your treatment to take place.
Getting a referral
If you are already under the care of a Cleft Team, you can arrange for an appointment by calling them. Otherwise, you can get a referral from your GP/dentist after explaining why you think specialist treatment or an assessment from a cleft specialist is necessary. It can be helpful to know the details of your local Cleft Team before you request a referral – you can find a list of Cleft Teams in the ‘In Your Area‘ section, or on the NHS Cleft Teams page.
Your GP or dentist may not always think a referral is the best course of action. It may also be the case that your particular issue isn’t considered ‘cleft related’ and as such the team may not be able to take a referral. Listen carefully to the reasons for this. If you still disagree, ask that your request and the reasons for refusal are recorded in your patient notes. You may want to get in touch with your local Patient Advice and Liaison Service (PALS) to ask for advice about this going forward. You may also want to make a formal complaint, in which case you can ask about the complaints policy at the practice.
Note: Patients in Wales and Scotland should be able to self-refer without needing to go through a GP or dentist. You can download a self-referral form for Scotland here.
What happens if I move house?
- You can continue to be seen by the same Cleft Team as long as you’re willing to travel.
- You can also switch to the Cleft Team most local to you. Check the map in this pack or visit com/cleftteams to find your nearest team. To switch, you’ll need to register with a GP in your new location and ask them to refer you to the local Cleft Team.
- If you’re switching, let your existing Cleft Team know where and when you are moving.
What happens if I move overseas?
- Depending on the health system in the country that you are moving to, you may not be able to access cleft treatment as an adult, or you may have to pay for it.
- Not all countries have dedicated Cleft Teams, so you may not get the same experience of treatment as you would expect in the UK.
- If you’re travelling on a visa, it’s worth checking that your visa includes cleft care, or that your travel insurance covers any emergency care that you might need related to your cleft.
How long should I expect to wait before the Cleft Team will see me?
- The length of time it takes for a referral to be picked up varies depending on where in the UK you are based, who you are waiting to see, and a variety of other factors.
- Generally, you can expect to be seen for an initial appointment within 3-6 months of your referral being made.
- If you have not heard from the Cleft Team within 6 weeks of the referral being made, contact the Cleft Team directly to make sure that they’ve received the referral.
- You can ask your GP for a copy of the referral letter for your own records.
What happens when I see the Cleft Team as an adult?
- Returning to the Cleft Team as an adult may be a bit different to your memory of cleft services as a child. Different teams work with adults in different ways.
- Your first appointment as an adult might be with the whole Cleft Team (also called a ‘multi-disciplinary team’ or MDT) all at once. Alternatively, it may be with one or two members of the team who will refer you onwards as necessary.
- If you’re seen by the whole team, it will likely include a Surgeon, Orthodontist, Speech Language Therapist, Dentist, Clinical Psychologist, and sometimes other specialties such as a Geneticist. These clinicians are all cleft specialists in their field of healthcare.
- After the initial appointment, your future appointments will usually only be with the clinicians who are actively involved with your care. In some cases, you may continue to have appointments with the whole Cleft Team if appropriate.
Is there an age limit to returning to cleft treatment?
- Adults are entitled to return for specialist assessment under the Cleft Team at any age.
- Some treatments carry more risk when you are older. If that is the case, your Cleft Team will discuss these risks and your options with you.
What if my GP or dentist won’t refer me?
- Sometimes GPs and dentists are unfamiliar with how cleft care in the UK has changed, and may incorrectly believe you’re not eligible for treatment.
- Please click here for a letter to GPs and dentists which explains to them why you are eligible for a referral to a Cleft Team, and how they can arrange this.
- If your dentist or GP is still reluctant, ask them to phone the Cleft Team for advice.
- If they refuse to do this, contact your Cleft Team directly and ask for their help. They will usually contact your GP directly.
What if I don’t know which specialist I need to see?
- You don’t need to worry about working this out yourself!
- Visit your GP or dentist and ask them to refer you to the Cleft Team for a general assessment of your concerns and needs.
- The discussion in your first appointment will help the Cleft Team decide which clinicians you need to see again to take your treatment further.
How do I find my nearest Cleft Team and get a referral?
See the referral pathway and Cleft Team map and contact details found elsewhere in the Leaver’s Pack. You can also visit clapa.com/adults.
Peer Supporters are adults with a cleft who are trained by CLAPA to support others one-on-one over the phone or email. If you’re considering further treatment and want to talk to someone about it, you can get in touch with CLAPA to be matched with a Peer Supporter with similar experiences.
Our Facebook Group for adults with a cleft has almost a thousand members and is growing all the time. Here you can find others like you to share stories and experiences.
CLAPA’s Adult Voices Council is made up of adults with a cleft from around the UK who meet up four times per year to discuss issues brought up by others, themselves or by CLAPA which are relevant to adults with a cleft. This can be anything from the content of new leaflets to the implications of new research. If you have an issue you would like Adult Voices to discuss, please do get in touch with them.