New Report Highlights Inequality in Speech & Language Therapy for Cleft Palate Children

October 12, 2017

The Cleft Lip and Palate Association (CLAPA) is extremely proud to support the findings and recommendations of the March 2017 Report to NHS England on Speech and Language Therapy (SLT) Provision in Cleft Care written on Behalf of The Clinical Reference Group for Cleft Lip and Palate.

CRANE statistics from 2015 showed speech outcomes for children aged five years who were born with a cleft palate in 2007-2008. There were many differences across centres in England, Wales and Northern Ireland*. See the full CRANE report.

CLAPA wholeheartedly agrees with the findings of this report which states that the widespread inequalities in Speech and Language Therapy (SLT) for children born with a cleft palate are “unacceptable”.

*Scotland’s cleft service, CLEFTSiS, keeps its own database of statistics. As of 2016, these have started to be included in CRANE reports, but the statistics which led to this report about SLT provision were from 2010 and 2015 and did not include numbers from Scotland.

Background

Around half of all children born with a cleft palate will need some form of Speech and Language Therapy (SLT) to help them communicate clearly with others as they grow older. SLT is a vital part of the cleft care pathway in the UK.
In 1998, before the Cleft Teams as we now know them were created, the CSAG report into cleft care in the UK found that many treatment outcomes, including speech, were “disappointing”. The recommendation made at the time from the Royal College of Speech and Language Therapists (RCSLT) was that one specialist SLT should be provided per 20 cleft births per year, and that funding for local SLT provision should be ring-fenced.
Despite these recommendations, the National Service Specification (NSS) for children born with a cleft does not set out minimum standards for how the SLT service is delivered, unlike other services around cleft lip and palate. This means there can be big differences in how this service looks in different areas.

How are the SLT services different across England, Wales and Northern Ireland?

Between Cleft Units, regional spending for SLT ranges from £900 to £3300 per cleft birth.
The SLTs themselves have between 11 to 53 children born with a cleft per birth year to look after each – not the 20 per birth year that was recommended.

In the NHS, services are commissioned by either Specialist Commissioning Groups (SCGs) or Clinical Commissioning Groups (CCGs). These groups are responsible for looking at the needs of people in a certain area and planning a service which works best for them.

The three Cleft Units with the most funding are able to employ cleft specialist SLTs to provide the majority of the therapy in partnership with local services rather than relying on locally commissioned, non-specialist SLTs to do this work.

Units with the least funding have to rely heavily on locally commissioned, non-specialist SLT services to provide treatment. This can work well if there are enough sessions dedicated to cleft and enough locally funded SLTs to go around, but unlike specialist services like cleft, these rely on local funding decisions by Clinical Commissioning Groups (CCGs). These SLTs may not have the specialist knowledge or skills that other children with a cleft palate benefit from, and differences in how local services are delivered can mean it’s difficult for the Cleft Unit to make sure everyone gets treated the same.

In 63% of services, there are no sessions specifically for children born with a cleft palate.
Of the 37% that do have cleft-only sessions, the SLTs have different levels of skill, experience, and expertise when it comes to cleft.

How does this change what therapy children receive?

Having the right Speech and Language Therapy to deliver treatment at the right time is essential for children with a cleft to ensure any speech difficulties are picked up and dealt with early on. Therapy is also often needed to decide whether or not more surgery is needed to help a child’s speech.

But there are big differences in the SLT children with a cleft palate receive, including differences in how often they’re seen, how much time they have, how they are prioritised, and how long they have to wait. These differences aren’t usually based on evidence around what would be best for the child, rather they’re down to cost and caseload demands.

In 16% of services, children are seen in 6-8 week on/off blocks of therapy, often with long waits in between. Other services will have 3-12 regular sessions per year instead.
Only 7% of services can offer SLT straight away – most children have to wait 2-8 weeks, with 16% waiting over 18 weeks, and some over 12 months!
Two services offer no direct therapy before age four, two offer no therapy after age five in most cases, and 11 services offer no therapy after 11 years of age.
Even for one Cleft Unit, there can be a big difference in what therapy children receive because of how various local services are run. One child may receive one direct SLT session of 30-60 minutes per term, but another child under the same Cleft Unit may be able to get therapy from a specialist for 20-40 minutes on a weekly basis, with 10-12 appointments per term as necessary.

What does this mean for children who need SLT?

This report concludes that while there’s a lot of evidence to show that SLT benefits children with a cleft palate, the therapy they usually get looks very different to what this evidence says they need.

The differences in funding, skills and service delivery can make it very difficult to make sure children get the appropriate SLT to meet their needs.

Recommendations suggest that there should be one full-time SLT per 20 cleft births per year, but there’s no correlation between the number of cleft births in an area and the level of specialised and local SLT funding.

Although it is not possible to identify a direct relationship between SLT provision and speech outcomes in cleft care , the report points out that SLT provision may be contributing to the large differences in speech and language outcomes across the UK that were seen in the 2015 CRANE report.

How do we know this?

Cleft is a complicated condition, and speech outcomes rely on more than just the local SLT service, so we can’t say by looking at the numbers alone that differences in service delivery is the only reason outcomes are different.

But we can look at what happened when Units change how they provided their SLT services, and see what impact this has on speech outcomes. This report looked at one unit which reorganised their service to look more like the service the RCSLT originally recommended, with enough funding in place to support this. They focused on making care more equitable and accessible across the area, and on closer working with local SLTs to improve quality and quantity of care. There was an improvement in speech outcomes during this period.

Another Unit this report looked at made a number of changes to improve speech outcomes, including working to make the most of local SLT services. But this Unit also had the lowest specialist SLT budget, and its SLT services were dependent on local funding decisions, which is risky. This Unit had some of the worst speech outcomes in the UK.

The report concludes that there is an urgent need to address the inequity in this area of specialised commissioning.

How has this happened?

It takes around 6 years for changes in SLT services to start affecting the statistics around speech outcomes.
Since 2010, SLT services have been eroded locally and nationally. In some local services, cleft sessions have been cut, and specialists have been absorbed into other posts. Some positions have remained unfilled when staff leave or are made redundant. As the report notes, “SLT appears to be disproportionately targeted for down-grading of posts and reduction in provision.”
73% of SLTs said that caseload demands were the main factor limiting the service they were able to deliver.

The report concludes that there is “strong evidence that CCGs and SCGs are commissioning and providing SLT services based on cost and demand rather than evidence based practice.”

A key goal of NHS England is to “ensure that patients have equal access to services regardless of their location”. This goal is clearly not being met in the case of SLT for children with a cleft palate.

What are the Recommendations?

CLAPA stands behind all the recommendations made in this report, however we would like to highlight three in particular:

All regional cleft units should have a specialist team of SLTs (at least one per 20 cleft births per year) with the appropriate mix of skills, and a consultant level Lead SLT to oversee the service. Having this in place across the UK will go a long way towards reducing inequality.
Therapy will be based on evidence and best practice, and will be jointly agreed between the local SLT team and the regional specialist SLT team.
National, evidence-based guidelines on best practice in SLT with children born with a cleft palate should be developed.

Creating a service which is based on evidence around what is best for children with a cleft palate is something we can all agree on. However, putting these recommendations into practice and ensuring they make a difference will mean convincing the different NHS Commissioning Groups committing to more funding.

What can you do?

Are you concerned about speech and language therapy in your area?

Find your Clinical Commissioning Group and get in touch to ask what they are doing in response to the findings and recommendations laid out in this Report.
If you believe there’s a clear lack of provision and underfunding in your local area, you can go directly to your MP and ask them to raise this issue with the local Commissioner. This is usually more effective, especially if you are willing to share how your family is personally affected.

Remember, personal stories always help to make a strong case, and you can back up your words with the statistics from this report, as well as CRANE’s report from 2015 which lists Speech and Language Outcomes for each Cleft Unit.

Here is a form letter you can use as a starting point to write to your local CCG or MP. Please adapt and edit this letter as necessary, and use specific local statistics wherever possible to give it maximum impact.

Dear [CCG or MP],

I am writing to express my concern over the findings of a recent Report to NHS England on Behalf of The Clinical Reference Group for Cleft Lip and Palate which shows a postcode lottery has developed for children born with a cleft palate in need of speech and language therapy (SLT). This report demonstrates that there are unacceptable inequalities in SLT provision and outcomes across the UK as a direct result of funding decisions made by Clinical Commissioning Groups.

As a parent of a child born with a cleft palate affected by the funding decisions of [local CCG] I would like to know what [you/your office] are planning to do to address this issue.

[If you’d like to write about your child’s experiences with SLT, what kind of difference it made, any difficulties you’ve had accessing treatment, how it’s affected you and your family, etc., do so here]

A key goal NHS England is to “ensure that patients have equal access to services regardless of their location”. This goal is clearly not being met in the case of SLT for children with a cleft palate.

Between Cleft Units in England and Wales, spending for SLT for children with a cleft palate ranges from £900 to £3,300 per birth. Within Cleft Units, there can be large differences in the timing, intensity, regularity and quality of therapy for each child.

In 1998, the CSAG report into cleft care in the UK found that many treatment outcomes, including speech, were ‘disappointing’. The recommendation from the RCSLT was that one specialist SLT should be provided per 20 cleft births per year, and that funding for local SLT provision should be ring-fenced. Neither of these have happened since. Caseloads for SLTs treating children with a cleft palate now vary from 11 to 53, not the recommended 20. It is no wonder that 73% of SLTs said that caseload demands were the main factor limiting the service they were able to deliver.

Without immediate action, this is likely to get worse. It takes around 6 years for changes in SLT services to start affecting statistics around speech outcomes for children with a cleft palate, so it is only now that we have evidence to back up what parents and health professionals alike have been saying for a long time now. In some local services, cleft sessions have been cut and cleft specialists have been absorbed into other posts. Some positions have remained unfilled when staff leave or are made redundant. As this report notes, “SLT appears to be disproportionately targeted for down-grading of posts and reduction in provision.”

I am writing to you to ask what you are doing in response to the shocking findings of the NHS England on Behalf of The Clinical Reference Group for Cleft Lip and Palate report, and to ask that you commit to the implementations of the recommendations outlined within it.

I ask that you pay particular attention to these recommendations outlined below:

All regional cleft units should have a specialist team of SLTs (at least one per 20 cleft births per year) with the appropriate mix of skills, and a consultant level Lead SLT to oversee the service. Having this in place across the UK will go a long way towards reducing inequality.
Therapy will be based on evidence and best practice, and will be jointly agreed between the local SLT team and the regional specialist SLT team.
National, evidence-based guidelines on best practice in SLT with children born with a cleft palate should be developed.

It has been almost 20 years since the original CSAG report into cleft care outcomes, and this new report from The Clinical Reference Group for Cleft Lip and Palate RCSLT demonstrates the severe consequences for children like mine when those recommendations are not followed.

Please, make a commitment to ensuring the same mistakes are not made again.

Yours sincerely,

[Your name and contact details]