The Manager of Healthwatch Bradford and District will submit Document “F” which sets out the findings from a new report by Healthwatch Bradford and District on the experiences of autistic people across the area.  It sets out the challenges that people face accessing both diagnosis and support and the impact that these have on them and their families and carers.  The report makes a number of recommendations to the Council and NHS.

The views of Members on the options contained in Document “F” are requested.

(Sarah Hutchinson – 01274 01535 665258)

The Manager of Healthwatch Bradford and District submitted Document “F” which set out the findings from a new report by Healthwatch Bradford and District on the experiences of autistic people across the area.

It was explained that it was estimated that 1.1 per cent of the UK population was autistic and that figure suggested that there were 5,877 autistic people living in the district.

Healthwatch Bradford had, in February 2017, published a report on the experiences of diagnosis for autistic spectrum conditions (ASC).  Since that time they had continued to hear from people about the challenges accessing a diagnosis or support and had prepared a new report, to be published in September 2018, focusing on access to support.

A detailed presentation was presented which gave Members a background to Healthwatch Bradford; the rationale for the production of the latest report and the findings and subsequent recommendations arising from that report.

The presentation revealed that since February 2017 people who thought they may be autistic continued to face delays in diagnosis and in receiving support. 

It was explained that an Autism Strategy was being developed by the Autism Partnership and although that strategy had not yet been formally adopted conversations had begun.  The strategy included, amongst other things, that:-

·         Local Authority and NHS staff should include autism awareness training for all staff.

·         Those making decisions affecting autistic people should have a demonstrable knowledge of that condition.

·         GPs should have adequate training in autism and a good understanding of the local diagnostic pathway.

·         The NHS should provide access to diagnostic services.

·         Local authorities and the NHS should jointly ensure the provision of an autism pathway.

The manner in which children could receive a diagnosis and support for autism was explained and it was confirmed that children, unlike adults, could access support prior to a formal diagnosis.  Members were advised that adults required a GP referral for diagnosis and that the service, provided by Bradford and Airedale Neurodevelopment Service (BANDS) had been closed to new referrals for three years.  It was stressed that without diagnosis adults could not access support and without an understanding of their condition appropriate care could not be put in place.

The findings of the new report had confirmed that BANDS continued to be closed to new referrals. People were left in limbo without an explanation of their needs or access to support services.  The report revealed difficulties with communication and information including that people were asked to use methods of communication they found difficult e.g.phone calls and, despite the introduction of the Accessible Information Standard in 2016, autistic people were often given information which was unclear.

The findings of the report showed that people felt desperate and vulnerable at times because support was not in place and  that the effect on carers was significant.

Recommendations arising from the report included:-

·         Implementation of the Autism Strategy.

·         Expansion of the diagnosis service to include those on the waiting and those waiting for referral.

·         Collection and publication of length of time to diagnosis in Bradford.

·         Bradford should aim to become an Autism Friendly City with health services and the Council aiming for Autism Friendly Business accreditation.

·         Continuous professional development training for NHS and Council staff to improve understanding and accessibility. 

·         An expansion of support for parents, families and carers.

Following the presentation a Member questioned if there was a good picture of the distribution of the condition and the areas of greatest needs.  He suggested that a profile of the communities whose needs were not being met was required.   The Director of Public Health explained that the issue had been recognised and that a full needs assessment was being conducted to inform a redevelopment of strategy to pick up on epidemiology and enable areas of need to be targeted.  It was hoped that a draft would be completed in November to enable informed decisions to be made to address levels of need.

A Member raised concerns about issues currently being faced by people with autism by other agencies including the removal of benefits following capability to work assessments.  He referred to an Autism Strategy operated by Leeds City Council which was considered in every other strategy developed.  A Non Voting Member echoed those sentiments and reported incidents where people had been thrown out of pubs because their behaviour was not understood whilst other places were more accommodating.  He suggested that autism awareness training could be included in the licensing process.

The cost which would be faced  by adults seeking a private diagnosis was questioned but that figure was not known.  It was also queried if any specific issues had been identified in the Black and Minority Ethnic (BME) community and it was explained that people approached Healthwatch Bradford and that a breakdown of ethnicity or their location was not recorded. It was acknowledged that communication difficulties would be exacerbated for autistic people who did not have English as their first language.

Examples of the impact of autism on a day to day basis was requested and the Healthwatch Manager provided examples of people who had not received a diagnosis and had subsequently struggled all their lives because of a lack of information; support and understanding.  This had disrupted their education and impacted on their employment.  In extreme cases those struggles had resulted in people being in prison.

Members agreed the necessity of a focus on awareness and training to ensure the condition was picked up earlier to ease distress for sufferers and to allow them to receive the necessary support at an early stage.  Members discussed the requirement for schools and GPs to receive training and it was acknowledged that training was required for all those working with people and should be a fundamental element of equalities training.

The number of individuals awaiting diagnosis was questioned and it was noted that there were delays in diagnosis for both children and adults.   The Healthwatch Manager explained she had heard from adults who had been awaiting diagnosis for three years although it was felt the delays for children had reduced.  A representative from the Clinical Commissioning Group believed that there were 750 children on the waiting list and the BANDS service had closed because of recruitment issues with 63 adults on the waiting list.  It was believed that there were 140 adults on the waiting list for individual funding for out of area diagnosis.

It was questioned what would happen to those people waiting for diagnosis and it was explained that some of those would make individual funding requests to the Clinical Commissioning Group (CCG) and those would be assessed on a case by case basis.  Clinical and Public Health colleagues would come together and if they felt that a person could not wait they would be referred for a private assessment paid for by the CCG.

Members expressed concern about the levels of people awaiting diagnosis and questioned if there was any support for them in the meantime.  In response they were assured that there were many links in Healthwatch’s new report and national websites with additional information.  The Autism Alliance was a source of help and there was an autism support group in Keighley.

A Member was concerned that a study by the University of Newcastle had found that 66% of adults with the condition had contemplated suicide.

A non voting Member referred to the wide spectrum of the autism condition and was concerned that people were being wrongly labelled as difficult and excluded.  She stressed the necessity to raise awareness and availability of accessible information for the general public as well as people with autism.   She cited an example of a business which had compiled a list of information to help an employee with the condition.  The Healthwatch Manager agreed that Autism Friendly Business Accreditation would develop better employers and, therefore, better businesses.

A Member pointed out that Elected Members’ roles included acting as corporate parents for the children in local authority care. Concern was expressed about the reduction of support assistants in school which would impact on the level of support to pupils.  He referred to a rise in the number of pupils between age 14 and 19 who had been excluded from school because their conditions were not understood.  He wished for all Members to lead in awareness of the condition and for Bradford to become a city which celebrated autism and believed targets should be set to become an ‘Autism Friendly Society’.   He volunteered to become involved in any working parties which could be formed to raise awareness and enable people to contribute to society.

A representative of Choice Advocacy addressed the meeting and, whilst agreeing with the views of Members, raised an issue which she felt had been omitted which was that of parents with autism.  She explained that Choice Advocacy dealt with approximately 30 parents with autism last year.  It was felt that there was no corporate support for those parents who had to struggle to gain diagnosis and with Adult Social Care Team assessments. The stress of raising a family for people without autism was acknowledged and the additional difficulties people with the condition faced were much greater.  It was explained that there was a high incidence of hereditary autism and that parents were often blamed for a lack of empathy or any bad behaviour of their children.  

Resolved –

That a joint NHS Council report responding to the Healthwatch findings and recommendations be presented to a future meeting and that the report covers issues raised in the meeting around data and gaps in data; schools; training; awareness raising and access to information.

ACTION: Strategic Director, Health and Wellbeing