Cerebra Survey Results – Diagnosis Delay and Disabled Children

Families of disabled children are experiencing substantial delays in getting an NHS diagnosis. Support services are not always offered, when they are they often do not meet the needs of the family and too few parents are being given written information when they receive their diagnosis.  Moreover parents are reluctant to complain about any of this. This is the conclusion drawn from a survey of Cerebra members carried out in October 2015.

The laws of the four nations of the UK place enforceable duties on public bodies to provide education, health and social care support for disabled children. The research evidence suggests that disabled children and their families experience considerable difficulties in accessing these rights and in consequence, in accessing good quality health, social care and educational provision.  To help address this, Cerebra fund a research programme – The Legal Entitlements Research Project.  A key element of the research is to see if effective processes can be developed to enable commonly occurring social, health and educational support problems to be resolved speedily and with the minimum of conflict.  The research programme works by accepting referrals from family members, those referrals are answered individually but records kept of the issues referred.  An analysis of the referrals identified a number of ‘generic problem areas’ and a recurring theme ‘in many of the cases’ is that of delay:

  • Delay in carrying out assessments and reaching a diagnosis;
  • Delay in putting in place support services or adaptations;
  • Delay in responding to expressions of concern by families.

To test this finding of delay further, between 21st September and 14th October 2014 we carried out a survey of Cerebra members.  While any survey can only provide a snap shot of the experience of those that answered the survey the high response rate of 1937 parents, in a three week period, is noteworthy.  Of those 1937 respondents, 1452 (or 74%) reported that they had experienced a delay that they identified as being problematic.

Summary of Survey Results

We asked ‘how long did you have to wait for a diagnosis (from your first request to the delivery of the diagnosis).  A significant number of respondents (783 or 44%) had to wait over two years for a diagnosis; of note is that 320 respondents had to wait more than 5 years.  These are substantial waits in the context of childhood.

We asked if families had been given a reason for the delay and over half (53%) were given no explanation.  Of those given an explanation, the most common explanation was ‘reluctance to place a diagnostic label on a child’ and/or ‘shortage of suitable experts/waiting lists’.

We went on to ask if the respondent felt that harm had resulted from the delay and if so, what that harm was.  1024 respondents (71%) said that they did believe harm had resulted from the delay and that harm was categorised as:

  • Impact on the health and/or well-being of the child;
  • Impact on the education of the child;
  • Impact on the health and/or well-being of carers or other family members; and/or
  • Financial impact – this was largely about taking unpaid leave, reducing working hours or giving up work.

We also asked about the support the family received after diagnosis.  The majority of respondents (53%) said they were not offered follow-up support and of those who were offered follow-up support, 37% felt that the support offered did not meet their needs.  We asked respondents if they were given any written information about their child’s condition or signposted to organisations that could assist them, 59% said they were not.

Finally we asked respondents if they had raised any concerns or made a complaint about the delay in acquiring a diagnosis or lack of support following a diagnosis.  Only 457 respondents had raised any formal concerns and of those only 108 felt their concern was dealt with to their satisfaction.

This survey demonstrates that Cerebra families:

  • are experiencing delay, sometimes a very significant delay, in getting a NHS diagnosis and these delays are causing difficulties for families;
  • support services are not always offered and/or do not meet the needs of families;
  • too few parents are being given written information or signposted elsewhere; and
  • carers are reluctant to complain, when they do complain their concerns are often not dealt with adequately.

What is Cerebra doing to help address these issues?

We are developing a toolkit that aims to support families and their advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. UK law provides powerful rights to access such support services, but our research shows that this alone is insufficient. The law can be complicated and difficult to understand.  It can be daunting, exhausting and sometimes intimidating to challenge public officials.

The Toolkit aims to develop effective strategies that families can use for themselves or advisers can use with families.  Strategies that will help to unpick commonly occurring problems and to develop effective strategies for resolving them.  It is based on the idea that it is in no one’s interests, including those of the public bodies, to have these commonly occurring problems and that most such problems are capable of being resolved without lawyers and without great expense to anyone.

Keep a look out for the toolkit which will be with you soon.