Health and Care Bill

Baroness Hollins Excerpts

Committee stage
Wednesday 9th February 2022 Lords Chamber

Moved by

[Baroness Hollins]

297L: After Clause 148, insert the following new Clause—
“Mandatory training on learning disability and autism
(1) In regulation 18(2) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 (S.I. 2014/ 2936), for sub-paragraph (a) substitute—“(a) receive—(i) such appropriate support, training, professional development, supervision and appraisal as is necessary to enable them to carry out the duties they are employed to perform, and(ii) in particular, specialist training in person on learning disability and autism, appropriate to their role, as set out in the code of practice issued by the Secretary of State under section (Mandatory training on learning disability and autism) of the Health and Care Act 2022.”(2) With regard to specialist training on learning disability and autism, the Secretary of State must prepare and publish a code of practice (“the code”) containing guidance addressing—(a) the content of mandatory training and its co-production,(b) the appropriate levels of training required across staff roles,(c) the co-delivery of training,(d) the accreditation of training,(e) the procurement of training,(f) the monitoring and evaluation of the impact of training, and(g) the implementation of mandating of training across regulated health and social care providers.(3) The code must incorporate—(a) the most recent Learning Disabilities Core Skills Education and Training Framework (or its successor framework, regardless of its name),(b) the most recent Core Capabilities Framework for Supporting Autistic People (or its successor framework, regardless of its name),(c) the autism strategy published under section 1 of the Autism Act 2009, and(d) recent guidance issued in accordance with section 2 of the Autism Act 2009.(4) The Secretary of State must seek the participation of and consult such persons and bodies as they consider appropriate—(a) in preparing the code,(b) in incorporating the relevant publications as set out in subsection (3), and(c) in revising it. (5) The Secretary of State may not issue the code or any revision unless a draft has been laid before and approved by a resolution of each House of Parliament.(6) The Secretary of State must review the code every three years and lay their findings before Parliament.(7) In this section—“appropriate to their role” has the meaning given by the code;“autism” means a spectrum of disorders which start in childhood, the clinical manifestations of which include atypical social communication and social interaction and restricted, repetitive patterns of behaviour;“in person” means training delivered by people in the personal presence of the trainee and not by electronic or digital communication;“learning disability” means a disability which includes a significantly reduced ability to understand new or complex information or to learn new skills, with a reduced ability to cope independently, which started before adulthood, with a lasting effect on development;“specialist training” means training co-produced and co-delivered in person by persons who themselves have a learning disability or autism, or are a family member of someone who has a learning disability or autism, and that is accredited, in conformity with the code.”

[Baroness Hollins (CB)]

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.

[The Deputy Chairman of Committees (Baroness Fookes) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite the noble Baroness to speak.

--- Later in debate ---

However, as the noble Baroness anticipated I might say, there are practical challenges with the proposed amendment. The Oliver McGowan mandatory training trial evaluations are still under way, and we expect the final report to be published in March 2022. The evaluation report is critical to inform the wider rollout. It will provide detailed information on costs and on the best way to achieve desired outcomes. It will also inform on how best to operationalise the training. Therefore, this amendment pre-empts key findings from the evaluation and would come into effect too soon. It is for this reason that I ask the noble Baroness to withdraw her amendment today. I propose instead that we make a commitment to review all options to introduce mandatory learning disability and autism training once the final evaluation report is published in March. This would include returning to the issue of how this could be included in the secondary legislation referred to in the amendment. I hope the noble Baroness feels sufficiently reassured by that commitment and will withdraw the amendment.

[Baroness Hollins (CB)]

My Lords, I thank noble Lords who have spoken in this short debate. I am disappointed that the Government do not feel that it is timely. March is just one month away—by the time the Bill becomes an Act and is implemented, it will be here. This amendment does not set in stone exactly how the training would be implemented. It talks about a code of practice which would, after consultation, develop the means and the method.

I know that questions were asked about whether the aim was to mandate a standardised and evaluated training and to define a set of standards in schools that have to be met, and that Paula and Tom McGowan favour a standardised training programme, the Oliver McGowan mandatory training programme. I want to end by again acknowledging and putting on record my appreciation of the hard work they have done. It will stand people with learning disabilities and autistic people well in the future. I look forward to further conversations with the Minister. There does need to be a link to health outcomes, whatever route is taken, through the national mortality review, and a willingness to review the adequacy of the programme on a regular basis, and I would be happier if it were in the Bill. I beg leave to withdraw the amendment.

Amendment 297L withdrawn.