Dr Pauline Heslop, Norah Fry Research Centre, School for Policy Studies

The challenges of providing a responsive GP service in the face of greater demand, a shortage of GPs and diminished available funding have been highlighted in the media over the past few months. Jeremy Hunt, the Health Secretary, has advocated for the greater use of telephone consultations to improve access to GPs by patients, but a new report published in the Lancet this week suggests that this does not reduce pressure on practices or save money, and may indeed increase workload. Yet some patient groups face greater barriers than others in accessing GP services. In recognition of this, the Royal College of General Practitioners (RCGP) has now selected autism as a clinical priority from April 2014-March 2017. The work, to be led by Bristol GP Dr Carole Buckley, will aim to improve access to primary care for people with autism and their families, and to enhance their health outcomes.

Autism is a lifelong developmental disability. It affects how a person communicates with, and relates to, other people and how they make sense of the world around them. The three main areas of difficulty which people with autism have are with social communication, social interaction and social imagination. While all people with autism will experience this to some degree or other, the scope to which their condition affects them varies considerably.

In order to ensure that the work of the Clinical Priorities programme will be rooted in the needs and perspectives of people with autism and their families, and that their views have been included from the outset of the work, we held a consultation event in Bristol, supported by PolicyBristol. The aim of the consultation event was to understand the particular barriers to accessing GP services for people with autism and their families, the ways of overcoming these barriers, and how to measure any improvements in GP services.

Strikingly, people with autism and family carers reported more negative than positive experiences of using GP services. Those positive experiences that were mentioned related to the perception that the GP really knew their patients with autism and their families, had a person-centred approach, listened to what people said, had a positive attitude, was broadminded and willing to be challenged. However, for most people with autism and their families, their experiences fell short of this in a number of ways, and a range of barriers were described.

The lack of ‘reasonable adjustments’ as required by the Equality Act 2010 was of central concern to both people with autism and their family carers. In law, all public sector services have a legal duty to remove barriers to accessing services for disabled people, and to ensure that policies, procedures and staff training enable services to work equally well for disabled people. The Act requires service providers to anticipate the particular problems that disabled people might face and make adjustments for these, not merely to wait until a service is required. Thus GPs should be anticipating some of the difficulties that people with autism might face in accessing primary healthcare, such as acute sensory sensitivity and intolerance of bright lights or loud noise, the person’s understanding of literal speech, their difficulties with executive functioning (with planning or scheduling events for example), and that changes in routine (such as attending a GP or hospital appointment) can cause significant anxiety and behavioural changes in a person with autism. Although the adjustments required are individual to each person, examples of reasonable adjustments that are likely to be helpful to people with autism include quiet waiting and consultation areas with minimal sensory distraction, longer appointments so that the person has more time to process information and relate their thoughts, the provision of information in a range of appropriate formats, the facility to speak with reception staff in private, and flexibility in the appointment system.

It was notable that throughout the consultation event, (which ran in parallel but separately for people with autism and family carers) that family carers spoke little about their own needs – the majority of their contributions were in relation to people with autism themselves. When questioned about this, they reported that if services worked well for people with autism, they were also likely to be working well for family carers, and that it would result in an easier, less frustrating journey for carers in which they did not need to ‘fight’ all the time. Many of the carers yearned for a holistic approach to support for their son or daughter, and for a time when they had confidence that their son or daughter was getting the support they needed and was thriving. Particular issues that family carers did specifically raise in relation to their own needs related to the impact that caring can have on a carer and other members of the family; a recognition that parents may, at some time, have to ‘let go’ and allow the person with autism to take responsibility for themselves or else ‘hand over’ this to someone else; and that there is a need for more awareness about carers’ own mortality and the need for shared planning and support as carers aged.

The consultation event ended with people with autism and family carers coming together to share their ‘take away’ messages – a key point that each person wanted noted. What shone through was the understanding, insight and expertise of people with autism and their families and how much they can offer those who choose to listen. I could find no mention in the new Lancet article about patient views of telephone consultations – but my guess is that had we consulted with patients an additional perspective would have been added. The challenge for us now in setting clinical priorities for people with autism is to ensure that their input makes a difference.