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Think Autism: a GP's perspective

Dr Carole Buckley is a GP in Bristol, and a member of the Royal College of General Practitioners intellectual disability professional network, where she has been appointed as the Clinical Champion for Autism. Dr Buckley also currently sits on the NICE guideline development group for those with learning disabilities and challenging behaviour. 

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Think Autism: a GP’s perspective

A year ago the government launched Think Autism, an update on the original Autism Strategy of 2010. The statutory guidance that followed this was published, after consultation in March 2015.

The professional membership body for family doctors in the UK and abroad is the Royal College of General Practitioners. It is the voice of GP’s on education, research, training and clinical standards. Its Clinical Innovation and Research Centre (CIRC) has a number of clinical priorities that recognize unmet need and Autistic Spectrum Disorder became a clinical priority in April 2014, and will run until March 2017.

The RCGP clinical priority aims to raise the profile and awareness of autism and enable the commissioning of good services from specialist providers.  It is of particular importance at present as commissioning is being led by Clinical Commissioning Groups (CCG’S) which are primary care lead.

There is a statutory requirement:

  • for all health care staff to have Autism awareness training.
  • to provide specialist training for key staff which includes GP’s 
  • for local commissioners to develop accessible autism diagnostic services and for these to be fully available to General Practitioners, recognizing that GP’s have a gatekeeper role to services in the UK. 

There is also a need to improve local information on the population living with autism to inform the Joint Strategic Needs Assessment and health commissioners. Think Autism reflects on this need and  the potential for improved coding through Read codes by GP’s. Read codes are the means by which all diagnosis are entered onto a GP computer to allow the creation of “disease registers”. These are the means by which a population can be counted and their care reviewed and assessed for quality. The GP computer system is likely to be the most comprehensive local resource on numbers as most people are registered with a GP, but many do not qualify for social services and have completed education so do not appear on these registers. It is exemplified by the Quality and Outcomes Framework (QOF) which has been a part of general practice since 2004 and was the first system to financially incentivise and measure the quality of care provided.

Disability discrimination legislation demands equitable access to all NHS services yet reasonable adjustments for those with ASD are often missed.  

A statutory requirement should leave no room for maneuver, yet in many areas of the UK the needs of those with autism are still not being met. 
 
The launch of the original strategy in 2010 does not appear to have had much impact on health services – there is a lack of autism awareness training amongst health care staff. Diagnostic pathways are patchy with some areas having made good progress and others failing miserably to provide both timely diagnosis or post diagnostic support.

There are a number of ways in which the health service is regulated and monitored – many would say there are too many ways in which it is inspected and regulated. I am inclined to agree that there is little evidence that inspection really improves services – it creates a structure of blame and shame. However it is what we are currently dealing with.

Which of the existing systems could be used to meet the statutory requirements?

The CCG’s have a variety of Outcomes Indicators that are used to measure the quality of their services.

The CCG’s are not currently measured on the autism services they provide – there are no outcomes indicators in the area of autism.  Unlike cancer and dementia to name but two areas with specific outcomes that services have to meet.

As a GP I am required to have Cardio-pulmonary resuscitation training every year, I am required to complete Child safeguarding training every three years. My appraiser reviews these on an annual basis.  Every five years I have to be reaccredited to continue working and my annual appraisals are a key part of that. The annual appraisal does not ask me about autism awareness training. The Care Quality commission (CQC) inspects my practice to see if it is safe and effective – checks on cleanliness, disabled access and many other aspects but does not ask if we have had Autism awareness training.

The Quality and Outcomes Framework (QOF) has targets for many physical conditions including diabetes, heart disease, asthma etc.  It has a target for keeping a register of those patients with a learning difficulty – although no measure of what we do with them. There are enhanced services, which are voluntary, to complete an annual health check for those with learning difficulties but it only reaches 53% of the population. 

It feels as though there is a gap between the Think Autism – Fulfilling and rewarding lives up date and what is happening on the ground.  Those with the authority to implement the statutory requirement do not seem to be doing it! The Statutory Duty does not seem to be translating into tangible benefits for all those living with Autism.

What needs to happen? 

  • The regulatory bodies such as NHS England – and the devolved nations, the CQC, the General Medical Council, the nursing and midwifery council to name but a few have to start asking NHS staff to step up to the mark. These regulatory bodies need to implement the statutory requirements clearly laid down since the Autism act 2009.
  • Autism needs to have a higher priority on the CCG agenda, there need to be outcomes that are clearly defined, measurable and which really make a difference to all those on the spectrum, and their families.
  • There could be QOF targets or enhanced services aimed at those on the autistic spectrum – particularly those without a learning disability. 

Only when the above starts to happen will we really see universal progress and improved services from the NHS for those on the autistic spectrum.

The RCGP is working to get outcomes indicators on autism for CCG’s in the 2016 contract. There will be changes to the training curriculum for new recruits. And there should be a cascade of training available. However the RCGP has no statutory power over established GP’s so we will continue to push the regulatory bodies to recognize the unmet need for this 1% of the population.

Our clinical priority is creating and signposting a number of resources to enable the statutory duties to be met. There are tools to help our patient’s access services available via the RCGP website.

Author: Carol Buckley 

Date added: 12 May 2015 

Comments

Thu, 28/05/2015 - 20:28

Dr Buckley makes some interesting points and I welcome her proposal that indicators be developed for autism in time for the 2016 CCG contract.

What puzzles me though is the reference to there being "a statutory requirement...for all health care staff to have Autism awareness training...[and for] specialist training [for] GPs".  What legislation is this?  And whatever it is, perhaps there is more to it - perhaps the training has to be delivered by 2020 or some far off date - certainly none of those I come in contact with in primary care or mental health in my area have had training in autism (and they are not shy of admitting this!).

Also, can these statutory requirements not be converted into initial 'outcome indicators in the area of autism'?  And why is it that the CQC avoid asking about these statutory requirements (when they take an interest in all other statutory requirements)?  And whilst the RCGP may have 'no statutory power over established GPs', surely it can choose to insist that membership not be available to those who fail to adhere to their statutory obligations - such as the apparent requirement to provide autism training to all their staff?  If the GPs are to provide such statutory training, then they will firstly have to learn about the condition themselves.  Surely that would be a start??!

MichStell

Tue, 09/06/2015 - 09:19

The Statutory Guidance for Local Authorities and NHS organisations to support implement of the Adult Autism Strategy (March 2015) says that NHS Bodies and NHS Foundation Trusts should ensure they are involved in the development of local workforce planning and GP,s and primary care practitioners are engaged in the training agenda in relation to autism.It also says that Local Authorities, NHS Bodies and NHS Foundation Trusts should ensure autism awareness training is included within equlaity and diversity programmes for all staff working in health and care.  The training should that it enables staff to identify potential signs of autism and how to make reasonable adjustments including their behaviour, communication and services for people who have a diagnosis or autism or who diaplay these characteristics.  It also mentions that those who have direct impact on a person with autism (this will include GPs) also have  demonstrable knowledge  and skills in many areas listed on pages 12.  and 13.  As chair of the Norfolk Autistic Spectrum Disorder Steering Group I am involved in our All Age Autism Stratgey (also required in the Autism Act).  I would like to thank Carole for this perspective. Many local authorities are struggling to gain the data on numbers of people with autism in their area.  Perhaps GPs can help with this as as Carole says.  I have a good practice guide for GPs that I wrote a few years ago if anyone is interested.  I have a daughter with autism who is now aged 20 and am a qulaified autism trainer in Norfolk.  If you want a copy of the good practice for GPs please email michellemouldimpact@yahoo.com 

Mon, 30/05/2016 - 08:57

It seems to be from my experience that ultimately nobody polices what happens on the ground and therefore , like most things it falls on those who are interested or motivated through personal experience. Sadly , at all ages we are failing autistic people and their families and it's really not good enough.