Healthwatch Finds Services For Autism in Bristol North Somerset and South Gloucestershire Need Improvements

Healthwatch Bristol Report Combined with North Somerset and South Gloucestershire:

What would you do? Was the question Healthwatch Bristol, North Somerset and South Gloucestershire posed to residents to find out what improvements they wanted to happen to NHS services.

It was part of a national engagement project commissioned by NHS England and Healthwatch England, that took place during April and May 2019.  The local results have now been published in a combined Bristol, North Somerset and South Gloucestershire (BNSSG) report. The overall aim of the research was to find out what priorities residents wanted as part of additional government funding to local NHS services over the next ten years.

A total of 18,000 people took part across England. Locally, Healthwatch recorded their findings in a General Survey and a Condition Specific Survey.

To the General Survey, Bristol residents submitted 141 responses, South Gloucestershire 88 and North Somerset 183.

To the Condition Specific survey, Bristol residents submitted 43 responses, South Gloucestershire 31 and North Somerset 95. Learning disabilities and autism made up 30 per cent of comments and cancer services 20 per cent.

Almost one million people live in the BNSSG area, with the local population projected to increase by around 35,000 by 2020. The current annual health budget for the area is around £1.5bn, but Healthwatch states that while funding for the NHS is growing year on year, ‘it is not able to keep pace with current demand for services’.

Long waiting times for GP services, short appointments and ‘unhelpful’ booking systems were some of the key findings in the General Survey. More investment in services allowing people to look after their own health and simply being listened to were also recorded.

when it came to long-term conditions, patients reported waiting times ranged from two weeks to more than two years to access the services and support they needed.

Cancer services fared well, with 79 per cent describing their overall experience of getting support and accessing help as ‘very positive’ or ‘positive’. Initial assessments were described as ‘fast’ and 59 per cent said they found it ‘very easy’ or ‘easy’ to access on going support post-diagnosis.

But when it came to feedback about learning disabilities and autism, a less positive picture was emerged.

Key issues included no support following diagnosis, long waits to get a diagnosis, a lack of joined up services and changes to benefits impacting on both those affected and their carers. Mainstream education was a significant issue, with a ‘lack of support’ and children being unlawfully excluded because they had autism.

Manager at Healthwatch Bristol and South Gloucestershire, Alex Francis emphasised the fact that services for those with autism or a learning disability needed work.

He said: “Local people were clear that while some NHS services in Bristol and South Gloucestershire are working well, such as the cancer health and care services we spoke to people about, others, including those for people with a learning disability or autism, are in need of significant improvement.

“This report provides a clear starting point based on the views and needs of local people for those improvements to be made as part of the local implementation of the NHS Long Term Plan and the additional funding from the government.”

When it came to post diagnostic support, a North Somerset resident said during a focus group that “After being diagnosed with autism, there is no support. I was later diagnosed also with ADHD, and there is no support. I have lots of questions and need advice, but there’s no one to ask.”

A Bristol adult with autism commented about the impact the locations of service can have on those trying to access them: “[At Southmead Hospital] the building design makes navigating it to even get to the specialist services too much. The levels of noise from the high ceiling reverberations mean it isn’t usable.”

Visiting the dentist triggered an autistic meltdown for one Bristol child. Their parent contributed: “[At the dentist for] my son…there is too much stimulus in the room. His challenging behaviour means he also may trash rooms…and people could get hurt when he is frightened and panicked…it means that people [the patient] in that situation never get proper care or access to services.”

An adult in South Gloucester said changes to the booking process meant they were unable to access services due to their disability affecting phone usage. “I used to be able to come in to see the nurse – now I can’t walk in I have to call to book.”

Not being able to get a diagnosis was another major barrier to accessing vital support services. A Bristol resident talked about not being able to get a female adult diagnosis of autism because the service used the ADOS test. The Autism Diagnostic Observation Schedule (ADOS) is used to diagnose autism from the age of 12 months upwards. In response to the Healthwatch survey, the respondent wrote: “I was denied autism diagnosis due to use of ADOS test and criteria which have been proven to be biased towards male presentation of autism… I am unable to access help, as I was not given an NHS diagnosis.”

When it came to accessing support for children, one respondent wrote: “CAMHS provided my child with six sessions for thirty minutes over six weeks -that’s it.”

The quality of assessments was also found to be questionable, another respondent wrote: “The assessment that came was just an inaccurate letter, which says he can walk to shops, go to the toilet and eat on his own – all untrue. No one came to see him.”

A North Somerset resident said: “Teaching Assistants are used at CAMHS as if they are therapeutic workers, but they have had no appropriate training.”

And, a Bristol respondent highlighted the fact that there is no mandatory training for autism for healthcare professionals: “Autism [is] not included in medical training as standard. The only professionals who get any decent time training are Learning Disability nurses, and they are very thin on the ground.”

Support in Bristol education was described by a resident as ‘appalling’ and a slew of comments from North Somerset residents showed the difficulties they too are facing with schools in the area.

One person said: “We have been told ‘if you don’t send your child to school (who has autism and anxiety) we will report you to the council social services, and they will be taken away’. But the help at school is very poor quality for our child and she doesn’t like her 1 to 1 as she was told to ‘shut your mouth’.”

Another talked about difficulties with academy schools: “Problem with training at Academies – no training and no consistency and the Local Authority has no power to intervene. Academy teachers don’t have to be autism trained.”

And a third discussed unlawful attempts to block autistic children from fully accessing the school curriculum:  “Schools use safeguarding to disapply people from some events. Legally the school can say due to safeguarding they cannot take them on trips and allow them to see events at schools – sometimes these are the very things that these types of children love to do and should do as it is getting them outside.”

Difficulties accessing home to school travel were also mentioned: “Ravenswood School fully prepared my child to go to college, but two days before he started the local authority said they could not provide transport to Weston College. [He] ended up not continuing his education.”

The results of the report have been shared with Healthier Together, to enable them to develop a Five Year System Plan. Feedback from the Healthier Together Panel, which surveys 1000 people from across the BNSSG area will be included. A second phase of public engagement will be carried out by Healthier Together to collate more detailed information from both residents and NHS staff.

 

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