Services

Adult Voices

As part of our five year Strategy review in 2008, CLAPA made a commitment to extend its services for adults born with cleft lip &/or palate. Prior to the reorganisation of cleft services many adults had received substandard surgical care and emotional support. Many felt that they had been under represented by CLAPA in the past and that adults had specific needs/issues which needed to be discussed and addressed. Some thought that CLAPA had been targeting families with young children and that adults had been sidelined.

On the strength of feed back from the CLAPA Conference 2009 we organised a Focus Group in April 2010. It was very well attended and eleven adults from all over the UK came along to discuss their ideas for how CLAPA could extend its services to adults and what issues needed to be addressed by both CLAPA and the NHS. The conclusions drawn were that adults wanted:

  • To take an active part in shaping the future of the services available to them.
  • To proactively generate ideas and form action plans for the Council.
  • To be the voice of adults born with cleft lip and/or palate and inform CLAPA of issues we should be addressing.
  • To help provide a regional presence to deliver CLAPA’s services effectively.

The Council was established in September 2010 and currently has nine members. If you are interested in joining the council and would like to be the ‘voice’ of adults born with a cleft contact sue.carroll@clapa.com or call 0207 833 4883 for more information. Alternatively you can download an application form from www.clapa.com/adults/article/935/.

Cleft Net East
  • Danielle Keohane
    Danielle Keohane

    My name is Danielle, I'm 19 and was born with a bilateral cleft lip and palate. I have always been involved in CLAPA and made my way to adult voices through the being in the CYPC for around seven years. I am especially interested in making the transition from childhood to adulthood as smooth as possible, and having spoken at conferences and workshops to medical professionals, I hope I am helping to achieve that goal! I am currently at Cambridge University studying Psychological and Behavioural Sciences and am hoping to go on to complete a PhD in Educational Psychology on graduating.
    Location:

Northwest England, Isle of Man, North Wales Cleft Service
  • Katherine Taylor
    Katherine Taylor

    Hello, my name is Katherine, I am 25 years old and was born with a cleft palate and Pierre Robin syndrome. I am a nanny for a family of 4 children. I have been a part of CLAPA all my life and have taken over from my mum, Nancy Taylor, who sold the Christmas cards at the Christmas parties. The reason I have decided to join the Adult Council is to help adults deal with their cleft and see if I can be any help from my experience.
    Location: Liverpool   E: .(JavaScript must be enabled to view this email address)

  • Saffwaan  Bham
    Saffwaan Bham

    Saffwaan (30) is from Manchester. He has come to CLAPA with a fresh face, as he had never heard of CLAPA until his most recent round of treatment for this cleft lip and palate. Being from an ethnic minority he feels that he can help others from ethic groups with cleft lip and palate and also provide insight into his experiences as an adult undergoing treatment. Saff works as a Business Analyst and Web Designer; his hobbies and passions range from exotic pets (marine fish and parrots) to anything technological or scientific.
    Location: Manchester   E: .(JavaScript must be enabled to view this email address)

South Thames Cleft Service
  • Andrew Dixson-Smith - Joint Chair
    Andrew Dixson-Smith - Joint Chair

    Andrew (born in 1951), I was born with a cleft lip and palate, which was successfully repaired at Great Ormond Street Hospital, at a time when to my knowledge, there were no cleft teams as such. I have had a long career in sales and marketing and have run my own business for the past 15 years as a care fees planning specialist, providing advice to the elderly moving into care. I have a high profile for this work and present seminars most weeks, regularly report to the National press with case study articles and make radio broadcasts. I would like to help younger adults and encourage them as much as I am able, as well as assisting CLAPA generally in awareness. I live in Surrey and my hobbies include motorcycling.
    Location:   E: .(JavaScript must be enabled to view this email address)

South Wales South West Managed Clinical Network
  • Bethan Parry
    Bethan Parry

    Hi, my name is Beth, I am currently 19 years old and was born with unilateral cleft lip and palate on my left side. I became involved with CLAPA about 4 years ago after joining the CLAPA Young People Council and last year I joined the Adult Voices council. I am also part of the Regional Coordinator Project Advisory Group as the youth representative. I am currently at Cardiff University studying medicine and hope to be able to raise awareness about cleft and improve cleft services overall, especially with regards to the transition from child to adult services and information about further treatment available for adults.
    Location: Cardiff

  • Emma Heesom
    Emma Heesom

    Emma Heesom was born in the 70's with a cleft lip and palate, transferred to Alder Hey Hospital in Liverpool she stayed as an in-patient for six months, spending her first Christmas in Alder Hey. Emma's family relocated to Cornwall when she was a very young child so her orthodontics and ear surgeries were carried out in Truro Hospital (Emma has a collapsed left ear drum) however she remained at Alder Hey and later as a young-adult Whiston hospital patient until she 'left' following maxillofacial and jaw surgery in her late teens. Emma's mum and dad were supporters of CLAPA as she grew up but were not aware of a Cleft Team and championed her care themselves. After a decade in Manchester Emma now lives in the South West and owns a marketing and PR agency. Emma joined Adult Voices recently to help represent adults with clefts and share her skills in marketing and PR.
    Location: South West

Spires Cleft Service
  • Charis Long
    Charis Long

    Hi my name is Charis I was born in 1987 with Pierre Robin Sequence and a cleft of the soft palate. I also had glue ear and was deaf until my second set of grommets were put in and have had a double squint repair. I am currently under the Oxford cleft team getting orthodontic treatment in Swindon leading to jaw surgery in Oxford. I am also under the Oxford genetics team to see if there is a link between my eye problems and my Cleft as well as to see why I have PRS as I am the only one in my family with it. I live in Marlborough a small town in Wiltshire, where I was also brought up with my 3 sisters. I trained to be a Norland Nanny and am currently working for a number of different families. I am interested in Egyptology and Classical History. I love being outside and going on walks and socialising with friends and family. I became a volunteer for CLAPA in 2013 and have helped at children’s residential weekends and have now become a peer contact. I am happy to hear from anyone in my area or anyone with PRS.
    Location: Wiltshire   E: .(JavaScript must be enabled to view this email address)

West Midlands Cleft Service
  • Tony Ruel - Joint Chair
    Tony Ruel - Joint Chair

    My name is Tony (born in 1954) and I am originally from Reading but now live in Birmingham. I was born with a cleft palate which was successfully repaired in Great Ormond Street Hospital in the early fifties. I have recently retired having spent almost thirty years in the teaching profession. I now want to devote some of my free time in Adult Voices to raise awareness of the needs of young adults with a cleft and to support them in whatever way I can. My hobbies include keeping fit, gardening, reading and travelling around Britain.
    Location: Birmingham   E: .(JavaScript must be enabled to view this email address)