CLAPA secures £323k grant from Big Lottery Fund

March 17, 2017

The Cleft Lip and Palate Association is delighted to announce we have secured a grant of £323,076 over three years from the Big Lottery Fund’s Reaching Communities programme to fund the work of our Regional Coordinators in 3 English regions.

What is this project?

Since 2011, we have been working to establish a network of Regional Coordinators across the UK, to work with volunteers within their regions to provide local support.

Our Regional Coordinators in the East, South East, and Central (Midlands) regions work with Branches and individual volunteers to organise local events and activities such as family fun days, summer picnics, and Christmas parties.

They also work closely with NHS Cleft Teams in their regions to make sure parents and patients are involved with decisions about care, and to help improve they way they communicate. This helps to make sure CLAPA’s services complement those of the NHS Cleft Teams.

CLAPA’s Regional Coordinators work very closely with volunteers and local Branches.

How has it worked so far?

The Regional Coordinators Project in England was initially funded by a four-year grant from the Big Lottery Fund’s Reaching Communities programme, and has been a fantastic success to date.

Reports from the project’s independent evaluator, the Centre for Appearance Research (CAR), have highlighted:

  • The number of parents/guardians accessing a local support network, feeling more able to address cleft-related issues positively and more able to support others;
  • The number of children and young people making friends who they can talk to about cleft issues, feeling more able to help other children affected by cleft, learning new ways of coping with cleft-related problems positively, and feeling more confident;
  • The number of volunteers gaining useful, transferable new skills, feeling more able to support others affected by cleft, more confident in their volunteering role, and more able to address cleft-related issues positively;
  • The number of adults feeling more confident, more able to support others affected by cleft, more able to address cleft-related issues positively, and accessing a local support network

CAR has recommended that the project is expanded, both within existing regions and across the UK, and the project has already been extended to Scotland.

This grant funds family days so local families affected by cleft can get together, have fun and make connections.

What have we learnt?

This evaluation has helped us to improve the way we work, and as a direct result of this we have completed a major update to our volunteering process to make it easier for people to volunteer and to ensure that volunteers are properly supported.

CAR’s evaluation also revealed a gap in support for adults born with a cleft, so in November 2014 we introduced Peer Contacts (now called Peer Supporters): trained adult volunteers with a cleft providing support via phone, email, and social media.

We also found out that people in our community found it difficult to contact our Parent and Peer Contacts directly, so we recently overhauled this system to provide a more professional service to people affected by cleft seeking peer support. This is now known as our Parent and Peer Supporter Service.

Our reviews of NHS Cleft Teams showed that few of them followed the NHS Service Specification’s requirement to include users in service development. As a result, in Spring 2015 we launched Patient Partnership Groups: groups of patients and parents/guardians who feedback on cleft services. We now have 4 groups in these 3 regions.

What’s next?

The funding for this project kicks off in April 2017, so expect announcements about new events and activities popping up soon.

As well as supporting our regional staff to continue their vital work, the Big Lottery Fund’s grant includes funding for some much-needed upgrades to CLAPA’s infrastructure, which will allow CLAPA to carry out an organisational strengths review and assess everything from data security to the way we run our feeding service.

The Future

While the Regional Coordinators Project has been a huge success so far, we know we still have a long way to go before our goals are met. Our surveys, polls, and evaluation by the Centre for Appearance Research show that continuing and expanding our work in these regions is the best way forward. This grant will cover our work in the East, South East, and Central regions from 3rd April 2017 to 27th March 2020, by which time we aim to sustain the project through our own fundraising.

CLAPA needs your help to do this – visit our fundraising pages to find out how you can get involved.

We are so pleased that the Big Lottery Fund has decided to continue its support of CLAPA and people affected by cleft lip and palate, and we’re so excited about what we’ll be able to accomplish over the next three years.

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