Parenting Special Children

The charity Parenting Special Children was launched by Ruth Pearse in 2006 with the aim of providing support for parents/carers raising children with additional needs. The charity’s main focus in its early years was on providing specialist parenting courses and support.

A need emerges

The idea for the Diagnosis Support Service emerged from the ‘Time Out for Special Needs’ courses. Session three of the seven-week course focuses on the feelings of parents, including those around diagnosis- a particularly vulnerable time for parents. Parents continually reported a lack of support available at that time. Feedback from families led to the decision that lack of support at diagnosis needed to be addressed. This was also a conclusion of a consultation with families through Reading Families’ Forum, highlighted in Reading Borough Council’s draft Strategy for Children and Young People with Learning Difficulties and/or Disabilities (LDD) 2009-2012.

Together with PSC trustees, Ruth worked on developing a Diagnosis Support Service, appointing the first service coordinator, Catherine Greaves, in the autumn of 2010, to run the service.

Funding

In late 2010 Ruth and Catherine applied for funding from the Big Lottery Fund: Awards for All, and received £8,700 to set up the Diagnosis Support Service.

Establishing the service

Thanks to a positive relationship with local paediatricians, built up through the excellent reputation of Ruth’s PSC courses, Catherine was able to establish a base at the Dingley Children’s Centre in Reading, one afternoon per week. Six peer supporters were trained and the service was launched in February 2011, offering, at this stage, a face-to-face service only. The two key types of support on offer were (and still are) information and signposting, to both national and local organisations and services, and emotional support.

Expanding the service

In 2012 the Diagnosis Support Service moved to the NHS Dingley Child Development Centre and also established a presence at two other centres, Wokingham Children’s Centre and Newbury Children’s Centre, so as to meet the needs of parents in all three local authorities- still by means, primarily of face-to-face meetings.

In 2012 and 2013 two more peer support cohorts were trained, one in Reading and one in West Berkshire. The West Berkshire training was recognised in The National Institute of Adult Continuing Education (NAICE).

A more flexible service

During 2012, delivery of the service shifted to a befriending model in order to offer a more flexible service to parents. Around this time, Wokingham Children’s Centre closed and we found that our West Berkshire centre was not accessed much and was therefore no longer cost and time efficient to run. The service has now become more flexible and meets the needs of Reading, Wokingham and West Berkshire parents through telephone, email and face-to-face meetings according to service user preference.

A key feature of the Diagnosis Support Service is that it is also now available to parents pre-diagnosis. Many parents are aware that their child has an additional need before a formal diagnosis is made, and indeed the waiting time for assessment can be lengthy, and hugely stressful for parents, who are often not able to access (other types of) support until a diagnosis has been made.

This article was written in March 2014