Cerebra and Cardiff Law School – Legal Entitlements Research Project
• Parents and carers of disabled children often experience difficulties accessing their legal rights.
The project deals with Social Care, Health and Education Support Services for children and young people with a neurological condition
• Our research aims to understand why these difficulties occur and to develop approaches that will assist in ensuring appropriate and timely services are provided.
A recurring theme within our work has been Delay
Delay: • In carrying out assessments and reaching a diagnosis; • In putting in place support services or adaptations; and • In responding to expressions of concern by families.
Diagnosis Delay and Disabled Children Survey • We carried out a survey of parents between (21st September and the 14th October 2015) to explore this issue of delay with parents. • 1937 parents responded to the survey. • Just a snap shot to provide an overview of current experiences. • 74% (1452 parents) reported that they had experienced a delay that they identified as being problematic.
320 waiting more than 5 years; 160 waiting 4 to 5 years; 303 waiting 2 to 3 years
Reasons for Delay
We asked: If you experienced a delay of more than 6 months, were you provided with a reason for the delay? • 20 % had not experienced a delay of more than 6 months; • 27% were given a reason for the delay; and • 53% were not given any reason for the delay. The most commonly cited reason for delay was reluctance to place a diagnostic label on a child, next was shortage of suitable experts/waiting lists. 963 respondents were not given a reason for the delay
Harm Resulting from Delay
We asked: Do you believe any harm resulted from the delay? • 29% said that they believed no harm resulted from the delay; and • 71% said that they did believe that harm resulted from the delay. 1024 respondents believed that harm resulted from the delay
Types of Harm
We then went on to ask about the harm that may have resulted from this delay and the majority of answers fell into one or more of these categories: • Impact on the health and/or wellbeing of the child; • Impact on the education of the child; • Impact on the health and well-being of carers or other family members; and/or • Financial impact (cited less than the above but was reported and covers anything from cutting working hours to loss of benefits).
Support after Diagnosis
We asked: Were you provided with or offered any support once your child was diagnosed? 1,765 people answered this question (drop out due to parents still waiting for diagnosis) of those: • 47% said yes they were offered support; and • 53% said no they were not offered support. 938 respondents said they were not offered support following diagnosis
Answered only by those who had received support
Written Information
We asked: Were you given any written information about your child’s diagnosis or signposted to another organisation that could assist you? • 41% said yes; and • 59% said no. Answered by 917 parents
Raising Concerns
Finally we asked: Have you raised any concerns or made a complaint about the delay in acquiring a diagnosis for your child or your lack of support following a diagnosis? Only 27% raised any formal concerns, the majority of parents did not. Of those who did raise concerns only 23% (108) felt that their concern was dealt with to their satisfaction.
Delay – Parents experience
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Families are experiencing delay, sometimes a very significant delay, in getting a NHS diagnosis and these delays are causing difficulties for families.
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Support services are not always offered and/or do not meet the needs of families.
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Still too few parents are being given written information or signposted elsewhere.
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Parents are reluctant to complain, but when they do complain their concerns are often not dealt with adequately.
What are we doing?
Developing a toolkit that aims to support parents and professional advisors. The tool kit will include: • Tips on how to approach public bodies; • Types of dispute and how to resolve them; • Precedent letters; • Guidance on preparing for meetings; • Links to other sources of information.
Over to Mair who is going to talk about her experiences of accessing health services following her diagnosis.