My Lords, Amendment 297L seeks to introduce mandatory training in learning disability and autism for all health and care staff. My noble friend Lady Bull is unable to be in her place tonight but asked me to express her strong support for this amendment.
The amendment is important because of the sheer scale of health inequalities that people with a learning disability and autistic people face. According to NHS England, people with learning disabilities have a median life expectancy 20 to 30 years shorter than those without a learning disability. In 2014, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found that 37% of those deaths may have been avoidable with better-quality healthcare.
There are a number of obstacles to achieving better outcomes. These include the low confidence of health and care professionals in their ability to identify and treat serious illness in these groups. The amendment aims to increase their knowledge and skills so that they can provide equitable care for people with learning disabilities and autistic people.
For many years the Government’s view was that mandating standards for training was not needed and that awareness raising should be enough, but then 18 year-old Oliver McGowan died—another tragic and wholly avoidable death of an autistic man with a learning disability. I could name so many grieving families who hope for some justice for their sons and daughters—families who hope that no other family will have to go through what they did. Oliver’s mother, Paula McGowan, is one determined lady and she persuaded the honourable Caroline Dinenage, then Minister of Health, to commission, pilot and evaluate the Oliver McGowan mandatory training programme for all health and social care staff. I welcome the Government’s continuing commitment to introduce the training.
The evaluation of the three pilots is nearly ready. So, what will happen then and how soon will the promised training begin? Of course, there are practical issues in rolling out an effective training programme nationally. I can understand possible government concern about the potential cost of introducing this, but these concerns should not hold us back from putting on statute something that the Government have agreed to. Oliver’s name was not permitted on the amendment but naming the training after Oliver would not only pay tribute to him and his family who have campaigned so hard but would remind us, and those doing the training, that this is not some dry academic subject. It is about people like Oliver: people who can be put at serious risk if staff are inadequately trained.
One aspect of the amendment goes beyond the Government’s existing commitment. This is the proposal for a code of practice with guidance on how the training would be created and delivered. The code would ensure that the key asks of campaigners would be put on a statutory footing, particularly the co-production and co-delivery of training with those with lived experience. Without this, I fear that the training would not reflect the key issues which people with a learning disability and autistic people face on a regular basis in the NHS.
I recognise that training might vary in detail depending on whether or not staff have a patient-facing role, and that clinical staff need a higher level of skill. I designed and led the delivery of training for medical students and trainee psychiatrists at St George’s Hospital Medical School for around 30 years, directly involving experts by experience from the beginning. This included working with disabled arts groups. For 20 years, I employed people with learning disabilities on the teaching staff to co-deliver the teaching and to participate as standardised patients in final clinical examinations. This meant that students had a chance to practise the communication skills that are central to improving outcomes for their patients; online training does not work to the same extent.
Currently, this type of education is dependent on a champion such as me to sustain it and that is a key reason why it needs to be mandated. One challenge that I am expecting from the Government is that it would be difficult to recruit and train experts by experience. I challenge this, given that only 6% of people with learning disabilities and 18% of autistic people are in paid employment. There is a ready workforce if there are willing employers and there are a number of academic departments able to offer the very simple and straightforward training and support they would need.
It is also crucial for the training to reflect and link with existing pieces of legislation and regulations such as the Autism Act, the learning disabilities core skills education and training framework, and the core capabilities framework for supporting autistic people. The amendment would require the code of practice to incorporate these and to ensure that any revisions to these regulations and legislation would be reflected in the code of practice and the training delivered. Building on this theme of co-production is the amendment’s requirement for the Secretary of State to
“consult such persons and bodies as they consider appropriate”
in the development of the code.
I hope the Minister will welcome this amendment, given the cross-party support that the development of the Oliver McGowan mandatory training programme has received in the other place. I beg to move.