Extracts from Welsh Assembly debate on debate on petition P-05-854, 'Make Learning Disability training mandatory for hospital staff' - Nov 8

We must hope that the Welsh Government will participate fully in this on behalf of affected patients from Wales. The nature of an individual's learning disability varies widely and will affect the kind of support they may require. Many people with a learning disability will have a reduced ability to cope independently in a variety of situations, including health services.

The Paul Ridd Foundation and Mencap Cymru recommend that all hospital staff working in a role that contributes to the health outcomes of people with a learning disability or autism should have the proposed training. As Mencap Cymru state, however:

'Autism is not a learning disability'.

And as the National Autistic Society state:

'Autistic people can have different "degrees" of learning disability…Some people will be able to live fairly independently—although they may need a degree of support to achieve this—while others may require lifelong, specialist support. People with a diagnosis of Asperger syndrome do not usually have accompanying learning disabilities, but may still have specific learning difficulties, such as dyslexia.'

As I'm told daily by people with direct lived experience—the real experts—we must ensure that the learning disabled and autism communities are given a direct role in the design and delivery of services, moving beyond awareness to understanding, acceptance and empowerment. In other words, instead of making them fit into a model designed by people who don't think like them, we must become more flexible in the delivery of services and see the world through their eyes.

As the Paul Ridd Foundation and Mencap state 'we need: more than E-Learning,' as we heard. Content and training materials should be co-produced with people with a learning disability or autism and their families. Unconscious bias and implicit attitudes need to be addressed, and the Mental Capacity Act 2005 and Equality Act 2010 must also be central to any training. And we must remember that that Equality Act 2010 requires that service providers must think ahead to take steps to address barriers that impede disabled people. In doing this, it is a good idea, it says, to consider the range of disabilities that your actual or potential service users might have. You should not wait until a disabled person experiences difficulties using a service. That's the law.

However, the regulation of health professionals, as opposed to social work professionals, is a matter reserved to the UK Government under the Government of Wales Act, which means that the Welsh Government could find itself in breach if it introduced a mandatory requirement for training of health professionals other than generic equality training. The Welsh Government could instead adopt the approach consequently taken in Paul Davies's defeated Autism (Wales) Bill, and make suitable learning disability or autism training available for health professionals.

The good news, however, as was briefly referred to previously, is that yesterday, following a public consultation, the UK Government announced its intention to introduce mandatory learning disability and autism training and its commitment to work with all professional bodies and the devolved administrations to agree a common core curriculum. Hopefully, therefore, we have a way ahead.

Rhun ap Iorwerth AM: I'm pleased to be speaking in this very important debate, a debate that highlights just how far, I think, society still has to go to work for people who have brains that work differently. The petition highlights just one case in which the neglect, ignorance and lack of training for staff about learning disabilities have resulted in an avoidable death, but it's one case that's part of a wider pattern in which people with learning disabilities, autism or other neurological divergence can experience worse health outcomes, despite comprising a significant proportion of the population.

In many health settings, we know that conversations can be structured in a way that misses the diagnosis of conditions. Most neurotypical people will provide relevant information that goes beyond a direct answer to a question. For example, 'Have you vomited?' Answer: 'No, but I feel very, very sick,' whereas perhaps an autistic person may just provide a literal answer to the question, 'no,' which can lead to incomplete communication of symptoms and, as a result, missed or delayed diagnoses, and, for somebody who is non-verbal, that becomes even worse. Indeed, rates of almost every type of physical and mental health problem are significantly raised in groups of people with autism and/or learning disabilities. Evidence suggests that the way in which people are asked for their symptoms, asked to describe their symptoms, has a significant effect on diagnosis...

Caroline Jones AM: I'm pleased to speak in this debate today, and thank the Petitions Committee for bringing it forward, and I also thank the family and friends of Paul Ridd for bringing forward the petition also. Mr Ridd's tragic death was a travesty and clearly highlighted serious failings in our NHS when it comes to patients with a learning disability. A lack of training and awareness of learning disabilities were highlighted as a contributory factor in Mr Ridd's death.

Thanks to pressure from Mr Ridd's family the Welsh Government issued specific guidance on improving care for people with a learning disability, acknowledging that communication and an understanding of these needs is of paramount importance. However, the guidance doesn't go far enough, and I and many of us across this Chamber campaigned for an autism Act, which would have required all health and care staff to have autism and learning disability training.

The Welsh Government rejected the need for such an Act, which I would still maintain is very necessary. However, in the absence of an autism Act, we should, at the very least, comply with the wishes of Mr Paul Ridd's family, friends and the nearly 5,500 Welsh people who signed this petition. Learning disability training for all staff working in health and care should be mandatory...