As part of the Spring Health Engagement, we were able to ask parent carers who attended our most recent in-person events about their experiences of NHS services.  

The question posed was:

What health and care services do you most need in your area and what makes it difficult to access these services?

There were some positive experiences of accessing services through specialist schools. One parent shared how their SENCo had been proactive in applying for an EHCP and another stated their school was “good at guiding the support needed”.  Parent carers who had struggled in the early years shared that once their child was in a specialist resourced provision or a specialist placement they can “access all their therapies” in these places. One parent shared that the school was not fully equipped to support occupational therapy needs but this can be accessed off site at a private clinic through the EHCP.

The main topic of conversation was receiving therapies, this tallies with what the parent carer forum frequently hears from parent carers. Mentioned most was speech and language therapies, but also parents brought up occupational therapy, physiotherapy,mental health services, eating issues and sleep.

They discussed BARRIERS to accessing services

• Different professionals in education had discouraged parents from asking for speech and language therapy because they were “not eligible”. We recently heard from Service Lead, Carmel Brady that where there is a need, the child should be referred (you can read more about how to get help here)
• Some parents really struggled to get support in the Early Years, part of the problem was they “didn’t know who to ask” . A number of parents had similar circumstances where they had no experience of navigating the system, as this was their only child with special needs. 
• Parents explained to us that until they were at school, it was difficult to ”get things into place”
• Other parents were concerned about the mainstream experience and only had support for language and occupational therapy needs once they had moved into a specialist resourced provision. Prior to this there was “pressure to stop – therapists continually offering to sign her son off”. This was also the same situation with physiotherapy.
• Lack of knowledge from the parents was seen as a barrier. One parent suggested “It’s a ‘chicken & egg’ situation – tell us what you need, then we’ll tell you what’s available.” A parent/carer who has a newly diagnosed child may not be aware of the condition and therefore can’t articulate what is needed There was some mixed experience with how “knowledgeable” the SENCo had been.
• Another well known barrier is that the waiting lists are long, one parent carer shared waiting 18 months and “there were no other therapies offered until they [their child] had the assessment”
• The process  to access therapies was described as “disjointed” , after diagnosis –  which also takes a while – a new submission for therapy is made which “elongates the process”
• Concerns were raised that criteria to accept children into services were “inconsistent” – two particular services that seem to have raised concerns were the eating services and sleep services.

Parents then reflected on GAPS in the service

• Only some parents knew about the advice lines for speech and language and occupational therapy and not all were clear when you could ask for help.
• The parents carers mostly knew about the local offer but could “not easily understand it” and stated it “is jargon” which, when you first engage with SEND, is difficult.
• Some parent carers expressed dissatisfaction with the therapy offered (i.e. sometimes limited) or the feeling that the expertise isn’t there to fully solve the issue.
• One parent asked what checks are made to ensure training is up to speed i.e. descriptions and understanding of many neurodivergent conditions have changed/adapted over the years.
• Sadly someone shared that they felt professionals still believe “parents are responsible for their children’s special needs manifesting” and offered a parenting course when they disagreed with advice.
• In addition an example was given of understanding how autistic girls present.
• Strong concerns were shared about the impact of having no intervention or little early on.  One parent carer stated “Lack of therapies is extremely short-sighted – simply builds problems up for the future when they are more serious, complex and costly.”As another parent carer reflected, “All the research says that earlier you can get support in, the longer term effects it has.”
• What stood out was that services people are able to access have diminished in the last 10 years because one person’s experience was from when their child was young. The children in reception now were not able to get therapeutic support such as attention autism courses and other interventions lead by learning support staff
• Some felt they had no choice but to pay privately – this was concerning as not everyone could afford this. The eating course was one thing that was mentioned as having to pay for.
• Physiotherapy was described as “non-existent. It is challenging because school did not understand needs relating to hypermobility. They “had to pay for private assessment” so that school would “put in place reasonable adjustments.”
• Disappointment with support available from occupational therapy needs were assessed but no therapy, just signposted – they have gone private. This mirrors experiences of other parents who felt compelled to access additional services.