CLAPA's History

CSAG: Changes to cleft treatment in the UK

1996: The Clinical Standards Advisory Group (CSAG) sets up a panel to investigate the current state of cleft care in the UK with a view to improving the service provided. CLAPA is invited to join the panel, and runs a postal survey to gather the views of patients and parents to ensure they are represented in the final report.

1998: Government accepts the Clinical Standards Advisory Group (CSAG) report into Services for Children with Cleft Lip and Palate, with recommendations including “a move towards 8-15 multidisciplinary cleft centres nationally”. This kicked off a complete overhaul of cleft care in the UK, and CLAPA was central to putting this in motion.

1999: The Kings Fund supported a CLAPA project to reach out to all front line health professionals (midwives, nurses) to provide basic information on cleft lip and palate.

2000: CLAPA launches a project targeting ultrasound clinics. This involved producing a set of guidelines on how to diagnose a cleft with an ultrasound scan and how to ‘break the news’ to expectant parents.

2001: After three years of negotiation (with CLAPA CEO Gareth Davies representing the voice of patients) the sites of the new Cleft Teams are announced. Carol Vorderman becomes CLAPA’s Patron.

Growing into a national charity

2002: CLAPA’s first children’s camps were launched in Scotland. This year also saw the launch of a Department of Health funded pilot project to reach out to GP surgeries and community centres.

2003: A new UK-wide training programme for Parent Contacts (now Parent Supporters) was launched. In-house trainers delivered the course all around the UK. New feeding bottles were researched, manufactured and launched in partnership with MAM UK.

2004: CLAPA organises an international conference, ‘Cleft Care and the Patient in the UK, Europe and Beyond’ for its 25th anniversary. Our Silver Jubilee was marked with balloon launches by CLAPA Branches around the UK, and a celebrity-studded ball with our Patron Carol Vorderman. This year also saw CLAPA receiving a lottery grant to help coordinate, direct and resource our volunteers and Branches around the UK, as well as the launch of our Volunteer Skills programme.

Due to a change in CLAPA’s governing documents, the charity was re-registered with Companies House on 16th August 2004. It was re-registered with the Charity Commission under its current charity number on 17th February 2005.

2005: Founding member Michael Mars stood town as Chair of CLAPA’s Trustee Board and was replaced by Dermot Coleman.

2006-7: CLAPA conducts a large-scale survey to look at how successful the regionalisation of cleft services had been. A report is published in 2007 which showed there was still much room for improvement.

2007: Launch of a new CLAPA website as well as our free new baby Starter Packs (now called Welcome Packs). This year also saw the first CLAPA Conference for adults, entitled ‘Talking Clefts’, taking place in Birmingham.

2008: Gareth Davies leaves CLAPA to set up the European Cleft Organisation (ECO) and Rosanna Preston is appointed as Chief Executive. The Children’s Council (now called the Children & Young People’s Council, or CYPC) was launched.

2010: A national survey of CLAPA members reveals a need for an increased local presence. This directly informs CLAPA’s Strategic Plan.

2011: Regional Coordinator Project first piloted in the East of England region

2013: National Service Specification for cleft services in England and Wales is produced with involvement from CLAPA and patient reps.

2015: CLAPA grows to 15 members of staff, including several new regionally-based staff. A new website is launched in December. The largest ever CLAPA Conference is held in London.

2016: Rosanna Preston steps down as CEO, and Dr. David Stokes is appointed to the position. Dr Browns bottles and teats are added to CLAPA’s range of feeding equipment, resulting in a 50% increase in demand for our feeding service over the next two years.

2018: CLAPA’s Adult Services Project is launched, with an aim of understanding and addressing the issues facing adults born with a cleft in the UK. David Stokes stepped down as Chief Executive, and Claire Cunniffe is appointed to the position. Claire joined CLAPA in 2011 as our first Regional Coordinator and has been Deputy Chief Executive since 2016.

2019: CLAPA says farewell to our Green Man Tower office in Islington to take up residence in The Green House near Bethnal Green. Celebrations were held with Carol Vorderman to mark CLAPA’s 40th birthday year.

Going digital-first

2020: The funding for CLAPA’s Regional Coordinator Project comes to an end in March. Plans are made to ensure local support is maintained, but the Coronavirus pandemic put these on hold.

Unable to deliver local services, CLAPA begins offering digital services to ensure our community is supported through the stress of lockdowns. The first public zoom events and Live Q&As are held in the summer, hosted by CLAPA staff and later volunteers. Many other services are digitised in some way, making them more accessible to people all over the UK.

2021: CLAPA launches a bold, one-year, ‘digital first’ strategy to redesign services for a digital world. This includes a restructure that moves staff from looking after geographical areas to developing and running particular services, giving staff greater freedom and focus.

2022: As lockdown restrictions lift, the data showed that CLAPA’s digital services are more accessible and sustainable, and have a higher impact on the UK cleft community. The decision is made to continue with the digital-first approach.

The ongoing impact of the pandemic on our fundraising sparked alarm in the summer, and in October, the #SaveCLAPA Appeal was launched. The overwhelming success of this award-winning appeal put the charity back on track and kickstarted the rapid development of CLAPA’s fundraising practices.

2023: The Cleft++ Mentoring Service launched in September. Nick Astor came to the end of his term as Chair of CLAPA’s Trustee Board. Oliver Hopkins was appointed as Interim Chair.

2024: CLAPA Companions Pen Pals was launched in the summer. CLAPA also started to offer Counselling to parents, carers and adults born with a cleft. Oliver Rendell took up the position of Chair of CLAPA’s Trustee Board. CLAPA also makes a move into campaigning and influencing – aiming to raise awareness and improve cleft care and outcomes for the community.

2025: A five-year strategy is launched aiming to reflect the voices of those with lived experience whilst prioritising long-term sustainability and innovation in services.

2026: CLAPA launches a new brand as Cleft Lip and Palate Action (CLAPA) and a new website in early February.

More Information

To find out more about where we have come from and where we are headed as an organisation, visit our ‘CLAPA’s Strategy‘ page.