What do local people tell us?

Over the last 5 years, multiple reports and workshops in Cambridgeshire and Peterborough have recorded the voices of autistic people and people with ADHD. Mental health has arisen as a consistent theme, as summarised in the diagram and table below.

There are some gaps in these reports: for example, we do not currently have a good understanding of the underlying reasons why people face barriers to accessing mental healthcare or whether these barriers are the same for every service. There are also limited local reports looking into the experiences of people from different ethnic backgrounds and people in contact with the criminal justice system. Full details of each report that was used in the summary diagram are listed below:

Reports on local people’s experiences

All-age Autism Strategy Implementation (2024)

Workshops involving parent support groups, advocates, and colleagues from health, social care and education. Whilst these workshops did not focus on mental healthcare, it was raised that:

There is increasing demand for autism assessments, which has led to long waiting lists. There are opportunities to increase early support and to provide more information for individuals seeking assessment to ensure that they understand the options available to them.
People reported facing barriers to accessing mental healthcare. Difficulty accessing services early could result in some people experiencing crisis when this could have been avoided through earlier intervention.
People reported that referrals to mental health services could be rejected due to ‘complexity’ or because they were waiting for an autism assessment. Some people reported being told that certain types of treatment (e.g. cognitive behavioural therapy) were not suitable for autistic people. A lack of alternative provision could leave autistic people with poorer access to care than non-autistic people.
People stated that there needs to be greater understanding of autism and reasonable adjustments within mainstream mental health services: particularly around autism as a lifelong condition and that a sudden deterioration in presentation could result from a mental health need.
A lack of speech and language therapy in mainstream mental health services could leave a gap in lower-level mental health support for autistic adults with selective mutism.
People report that it can be a complex landscape for individuals, families and carers to navigate different types of support services. For example, young adults may be supported in CAMHS, but when they move to adult services there are higher thresholds for accessing care.

PINPOINT Annual Survey 2023/24

The survey had 214 responses from parents and carers of children and young people. Feedback from parents included:

Struggling to navigate a complex system of support, and that everything can be feel like a ‘constant battle’ with the onus on them. For example, one parent carer said ‘waiting lists are too long. Won’t give son a diagnosis of ADHD until his anxiety is dealt with, but can’t offer us any support on that any time soon. The system is broken’.
Feeling that health services are difficult to access and that they feel they are ‘abandoned’ after their child has received a diagnosis of a neurodevelopmental condition.
Views that thresholds for mental health services are too high, and that waiting lists are too long, which can exacerbate poor school attendance for children who are unable to attend due to poor mental health.
Reporting a lack of post-16 support services.
Feeling that professionals do not have enough training, knowledge and understanding around SEND, particularly in schools.

SUN Network (2023, 2024)

The SUN Network collects feedback from people who have experienced mental health challenges. The length of the waiting lists for ADHD and autism assessments is a consistently raised in feedback to the SUN Network (Sidney, 2023, 2024). In October 2023, the SUN Network also reported emerging issues around (Sidney, 2023):

Increasing numbers of people feeling frustrated about how to get onto a pathway for ADHD and autism assessment, not realising it is through their GP.
People reporting struggling with long wait times for assessments, and a lack of support whilst waiting.
People trying to go private for assessments if they can afford it, but not getting any further support after diagnosis if they chose this route.

Family Voice Peterborough’s report on Health Inequalities (2023)

Views gathered from multiple sources from 50 parents/carers of children with SEND. Parent/carers who answered these surveys had children with SEND, with needs including autism, ADHD, global developmental delay and learning disabilities. Four key concerns were raised by parent carers:

Long waiting times for assessment and support
Lack of awareness around SEND, particularly in general practice and Accident and Emergency
Feeling that they were not listened to by healthcare professionals
Lack of reasonable adjustments being made in healthcare appointments

LGBTQ+ youth & mental health in Cambridgeshire and Peterborough (2022)

The Kite Trust interviewed 16 LGBTQ+ young people, aged 13 – 25. Although this report focused on LGBTQ+ young people’s experiences of accessing, or trying to access mental health support, many young people raised that they faced specific barriers to accessing support due to being neurodivergent. These barriers included:

Discriminatory views of neurodivergence
Assumptions that mental health difficulties were due to neurodivergence
Problems believing that young people could be both autistic and trans
Difficulties accessing mental health services (e.g. trying to arrange appointments)
Lack of LGBTQ+ spaces for disabled people

Autistic Voices: local people’s health and care experiences (2021)

13 autistic people and carers shared their experiences with Healthwatch

People raised they found it hard to access an autism diagnosis and that waiting times were too long.
People felt that healthcare professionals and wider society need to better understand autism, especially autism in women and girls.
People raised that they would like clear information about autism, local services and support. They also stated that there is a need for more support, including help coming to terms with an autism diagnosis, and advice on employment and benefits.
People wanted better and easier access to support services, including being able to communicate via email and text.
People felt that mental health services should have a good understanding of autism and the needs of autistic people, so that reasonably adjusted and effective care is always provided. For example, some people reported being told they were ‘too complex’ to access some services and struggled to find an alternative type of support.

Cambridgeshire and Peterborough All-Age Autism Needs Assessment (2020)

The CCG collected experiences of autistic adults and worked with PINPOINT and Family Voice to gathers the experiences of children, young people and carers.

Adults raised issues around long waits to access autism assessments, a lack of post-diagnostic support and the need to travel to London to access specialist interventions.
Children, young people and carers raised that:
- They felt it can be more difficult for girls to get an autism diagnosis than boys.
- There was a lack of post-diagnostic support, with someone reporting being ‘given a diagnosis with no explanation as to what it means’.
- There were long waiting lists for parenting support.
- Trying to access support can be difficult, with one person stating that there a ‘too many’ professionals involved in ‘complicated’ EHCP processes.
It was reported that autistic children and young people who had adversity in early life were not always being accepted for multi-agency support, as their needs were attributed to their early life events. This could be a barrier to them accessing autism services and mental healthcare.
Stakeholders felt there is a need for support services for autistic children and young people that help them thrive and prevent them developing mental health conditions.

References

The references for this section can be accessed here.