Health: Learning Disability and Autism Training

Baroness Hollins Excerpts

Monday 10th February 2020 Lords Chamber

Asked by

[Baroness Hollins]

To ask Her Majesty’s Government what steps they are taking to mandate training on learning disability and autism for all health and social care staff in England.

[Baroness Hollins (CB)]

My Lords, I declare a non-financial interest as founder and chair of the charity Books Beyond Words. The charity co-produces educational and therapeutic resources to empower people with learning disability and autism and to educate those who support them.

Paula McGowan, mother of Oliver McGowan, wrote to me ahead of this debate to encourage Parliament to add some urgency to the work that is currently being done. She said: “My teenage son Oliver died a horrific and preventable death due to ignorance. Ignorance from healthcare staff, who should have had the skills and expertise to understand his neurodiverse needs, but they didn’t. Oliver had autism and a mild learning disability as a result of meningitis as a baby. However, his additional needs did not hold him back and he had a good life; one that he enjoyed tremendously.” Paula went on to say that when his parents took Oliver, who was having seizures, to hospital, he was very frightened. Paula assumed that clinicians would understand autism and learning disability; understand about sensory overload, crisis, and meltdowns. She thought they would understand how to make reasonable adjustments. She thought they would know about the Autism Act. She said: “Worse still, I thought they knew more than me. But they didn’t. The reason for this was because they had received little to no training in autism and learning disability awareness. Most harboured subconscious bias and beliefs around Oliver’s additional needs and simply labelled his cries for help as a mental health condition.”

This ignorance led to Oliver being chemically restrained, and dying at just 18 years of age. The good news is that Her Majesty’s Government have committed to introducing the Oliver McGowan training in autism and learning disability awareness and this will be crucial to saving lives. In my experience, unless this is mandatory and co-delivered by experts by experience, it will not have the desired effect. I hope the Minister will agree. It is right and fair that all NHS and social care staff have the skills to treat and support patients like Oliver. Some 2% of the population have learning disabilities, and 1% have autism. They are separate and distinct conditions, but they can and often coexist. People with these labels belong in all racial, ethnic, socioeconomic and gender groups, and they are much misunderstood everywhere. I welcome this Government’s commitment to improve their health and care by including learning disability and autism as priorities in the long-term plan. The promise of £1.4 million to develop and test some new training packages and to make training mandatory is wonderful.

I have been passionate about this issue since 1981—shockingly, nearly 40 years ago—when I first became a senior lecturer in learning disability. That is when I started teaching medical students at St George’s in Tooting, and involving people with learning disabilities in regular small group workshops, initially with the Strathcona Theatre Company. In 1992, after a Winston Churchill travelling fellowship in the USA, I came back and persuaded St George’s to employ two people with learning disability as co-trainers to co-deliver our teaching for both undergraduate and postgraduate doctors. Our focus was not primarily to provide information but to develop their communications skills and their empathy, so that they would be positive and confident in their future encounters with patients with learning disabilities and autistic people. We trained and engaged actors with learning disabilities as standardised patients for the final clinical examinations, which essentially meant that our course became mandatory.

In its response to the Government’s consultation last year, Learning Disability England identified four key areas for training and I agree with all of them, particularly meaningfully involving people with learning disability and autism. A number of third sector organisations have already taken the initiative to do this and to offer training to health and social care professionals and health and social care students in universities and colleges. These include Mencap’s Treat Me Well, the My GP and Me programme from Dimensions and Books Beyond Words, and numerous initiatives by disability arts groups including Freewheelers, Act Too, Blue Apple Theatre and many more. Other special interest groups have been busy too, including some doctors who have recently succeeded in getting positive support from the Royal College of Physicians to develop a proposed credential programme with an advanced diploma for physicians and a certificate for GPs. Health Education England funding support would be needed to take this further but upskilling generalists with additional special skills could be a very positive step forward.

All the reports into premature and avoidable mortality in patients with learning disabilities point to common themes of inequality of care, lack of understanding and not listening to patients and their families. There is another worry too, known as diagnostic overshadowing, which seems to happen even in the most specialist services. The label of learning disability, or autism, seems to stop clinicians looking beyond the label. Everything is attributed to the label. This is ill informed. We owe it to Oliver, and all other patients who have received inadequate care due to ignorance, to do better. We owe it to our staff to ensure that they have the correct skills and expertise to enable them to give the best care possible.

It is vital that high-quality training, designed and delivered in partnership with people and families, is made mandatory. This needs to include those who expect to have regular contact—everyone working in primary care, A&E and the emergency services, and everyone working in specialist community learning disability services—and staff who can expect less regular contact. It also needs to include those working in specialist, acute and mental health services; they should have the highest level of expertise.

My son, who has a learning disability and autism, was involved in some training with his local GP practice. The face-to-face contact he had with another expert by experience talking to everybody in the practice, all of whom needed to have the same skill, changed everything. The receptionists, the nurses, and the GPs all needed to know and all needed to have face-to-face training. That is what makes his experience so different now. However, this must have a high profile if it is to have any chance of achieving culture change in our health and care services. I have been hosting a reception in this House for the Challenging Behaviour Foundation. One speaker, telling a story about what had happened to her daughter, whose care had been so poor, said that it was as if her daughter had not been seen as human. Somehow, we have to change the culture so that everybody sees other people as human. This discrimination has been evidenced many times, including in Mencap’s Death by Indifference report, in Sir Jonathan Michael’s Healthcare for All report and in the LeDeR reports.

It often seems to be family members who take the initiative. Ginny Bowbrick, a consultant vascular surgeon in Medway and mother of autistic twins with severe learning disabilities, told me what she is doing in her trust. Just as the NHS rainbow badge campaign has been successful in raising awareness and understanding of LGBT patients among NHS staff, her Not Less campaign seeks to do the same for patients with autism and learning disabilities. Ms Bowbrick says, “The message of the campaign is simple; to care, to understand and to listen.” She plans to distribute badges and information packs about autism and learning disability, with the help of the trust’s comms team, to dispel commonly held myths and misunderstandings. The Royal College of Surgeons of England has given provisional support to her scheme, pending a final review. She hopes that it will work alongside the proposed mandatory training.

The Association of Anaesthetists sent an excellent briefing for this debate, strongly endorsing better training to achieve a safe, high-quality service. It made the point that delivering anaesthesia to patients with learning disabilities or autism presents particular challenges. They may have epilepsy, be obese or have serious mental health issues and are more likely to have congenital and chronic problems, including craniofacial anomalies and airway issues. Their physical and psychosocial challenges and their heightened anxiety may affect their ability to cope and co-operate, potentially putting themselves and others at risk.

The Royal College of Psychiatrists, of which I am a past president, also supports mandatory training. Its briefing, for which I am very grateful, raises important questions among which I have picked out a couple. Do Her Majesty’s Government agree that although e-learning can have value within a broader package of training, it is not sufficient on its own? What steps are they taking to involve local societies, learning disability and autistic groups, carers and providers in the development and delivery of the programme and to meaningfully consider the specific barriers to employing people directly in programme planning and delivery?

The real purpose of today’s debate is to ask the Minister for an update on progress being made to develop the Oliver McGowan training in autism and learning disability awareness. It would also be nice to know when the White Paper on the Mental Health Act can be expected. I look forward very much to the contributions of other noble Lords and I am grateful for their participation.