An exploration of the UK unpaid carer's world

Notes for the Herefordshire Autism Partnership Board meetings.

The website author now lives near Oxford.

Herefordshire Autism Strategy 2018 - 2021.

These underpinning themes are include:

•Increasing the awareness and understanding of everyone that comes into contact with, or
provides services to, children, young people and adults with autism,

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The vision in the National Autism Strategy is that ‘all adults with autism are able to live fulfilling and
rewarding lives within a society that accepts and understands them. They can get a diagnosis and
access support if they need it, and they can depend on mainstream public services to treat them
fairly as individuals, helping them make the most of their talents.’ 

This vision is grounded firmly within an equality and human rights approach. It is based on the fundamental principle that adults and children on the autism spectrum have the same rights as everyone else, and that they should be able to access services and participate in society on an equal basis.

What do we know? 


There is currently no overall register of adults on the autism spectrum in the county. The National Autistic Society has published estimates of the prevalence of autism in the UK which note that although the figures for the prevalence of autism (ASD) cannot be precisely fixed, it appears that a rate of around 1 in 100 is a best estimate of the prevalence in children. A prevalence rate of around 1% would mean that the number of people with autism in Herefordshire can be estimated at around 1,860 including approximately 380 children age 0-18. This though is only an estimate. 


Draft – version 2.0 (post childrens scrutiny pre meet 4th April)

A further separate survey into Herefordshire’s educational provision was conducted in autumn 2017 by Herefordshire NAS. This had 35 respondents and it supported the views expressed in the earlier engagement commissioned by the Autism Partnership Board. 

The results are summarised below: 28 (80%) of the responses related to children aged between 5 and 15. 29 (82%) of responses were male. Most (71%) attend either a mainstream school or an autism-specific unit attached to a mainstream school 

The survey was evenly split in response to the question “Does your current education provision meet the needs of your child?” (yes, 18, no 17) however ? 51% were satisfied or very satisfied with the education provision received as opposed to 31% who were either dissatisfied or very dissatisfied. 

There were significant levels of dissatisfaction with issues such as:

 • getting educational support for their child – 60% strongly disagreed that it had been an easy process,

 • the speed at which special support had been put in pace – 66% strongly or somewhat disagreed that it had not been put in place quickly enough,

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Making sure that families and unpaid carers get the help and support they need Most responders knew where they could get advice, help and information about autism. 

The launch within the last 18 months of a local branch of the National Autistic Society has clearly helped several of the responders who mentioned how helpful and supportive the branch has been; ◦ 

“Since being put in touch with NAS my life and that of my son has greatly improved and they have introduced me to Hereford Carers and other families in my position”, ◦

 “The ladies from the NAS in Hereford are so kind and I really enjoy going to their groups”, ◦ “Herefordshire Carers have been brill and so have the local branch of the NAS the council are useless”, 

  • Criticisms of the help available for carers included the lack of a central single point for information: ◦ 

  • “Support (in) one place to ask all things not a lot of different places”, ◦ 

  • “There is very little support available to carers. Need to look for this yourself as information is not routinely given.” 

  • There were many comments regarding the lack of support carers generally: ◦ 

  • “Due to funding cuts at carer support group many vital support not available anymore”, ◦

  •  “The lack of support available to parents is dismal”, ◦ 

  • “The local Government should help more”, ◦ 

  • “There is not enough support for unpaid carers”

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  • - 71% strongly or somewhat disagreed that they had had enough information and support to help understand the options available 

  • When asked about what improvements to education provision could be made locally the most common responses highlighted  the need for more specialised autism provision and places, 

  • better trained staff in schools as well as greater awareness of autism in both the teaching profession, other pupils in schools and the general population as a whole.

  • When asked about what the main concerns parents have about the future many said that they did not think that their child would reach their full potential and that, after leaving education, there would not be sufficient help and support for them into adulthood. 

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Making sure that everyone is as healthy and well as they can be          a low number of responders

  •  “My doctor makes it easy for me to attend appointments” the responders were spilt
  • almost 50/50. As might be expected it was a more mixed picture when asked about other health
  • professionals making it easy to see them.
  • There were also comments
  • about how visits to doctors could be made more autism friendly. One parent told us: ”When I take my
  • daughter to the doctors I find that it's hard for her to sit a wait and we are always kept waiting and the noise levels are difficult for her to handle”.

  • There were also several comments on how local gyms could be more autism friendly by not being so noisy.

  • Getting a diagnosis also emerged as an important issue for people. A typical comment was: “After going
  • repeatedly to the doctors to be told there was no help to be diagnosed in Herefordshire I have given up going”

Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult
Autism Strategy here