Autism and Learning Disability Training: Healthcare Professionals

Kerry McCarthy Excerpts

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner]

I am grateful to the hon. Lady for making that point. We could probably find favour across the House and across the country for moving on from some issues at the moment, but she is absolutely right—such issues are very pressing and probably of huge importance to most people, especially when failure to address them leads to the kind of tragedy we have heard about.

[Kerry McCarthy (Bristol East) (Lab)]

As a Bristol MP, I thought it was particularly important for me to be here. Southmead Hospital is not in my constituency, but the University of the West of England nursing course provision is. I back up entirely what my hon. Friend says about the difficulty of getting qualified nursing staff. If staff are to have all the extra responsibilities and training that have been suggested, we must ensure that the sector is properly resourced and that properly trained people come through into the profession.

[Daniel Zeichner]

My hon. Friend makes a powerful point, which I am sure we will return to. Whatever changes there are in our relationships with other countries, the shortage of qualified nurses is a huge problem—it is something like 22% in my constituency. We are unlikely to make progress on this issue unless we have the people to do it.

It is difficult to make that point at a time of such intense financial pressure on the NHS, but I remind the House that that pressure is a choice. We are a rich country, and a change in the allocation of resources could dramatically change the state of our healthcare system. However, that stress, which stems from a lack of resources, staffing, beds and specialist care, can lead to a culture in which it is difficult to provide personalised care and have the confidence to deviate from established procedure.

Let me conclude on a slightly more optimistic note. In September, in a written statement in response to the learning disability mortality review, the Minister committed to completing a public consultation on proposals for mandatory learning disability training for all health and care staff. However, that change must be quick—we cannot afford it to end up, like so many Government initiatives, in endless consultation and no action.

In England, there is a duty in the Autism Act 2009 statutory guidance for all health and care staff to have appropriate autism training, but the implementation of that duty is poor. In response to a 2016 Public Health England survey, only 17% of localities reported having training plans for all health and care staff, while 10% reported having no plan in place. The Government must commit to mandatory autism training as well as learning disability training.

The National Autistic Society remind us:

“In August, NHS England announced that autism, alongside learning disability, will be one of its four clinical priorities in the upcoming 10-year plan to improve health services. This is a great step towards making sure that autistic people are supported by the NHS just like anyone else. Alongside tackling long diagnosis waiting times and supporting good mental health, we believe that the Long Term Plan should outline a comprehensive national training programme for all health staff.”

The learning disability mortality review, which was published in May, found that men with a learning disability die on average 22.8 years earlier than the general population, while women die 29.3 years earlier. Autistica’s research shows that autistic adults without a learning disability are nine times more likely than non-autistic adults to die from suicide—a truly shocking statistic. Mencap’s research shows that almost a quarter—23%—of healthcare professionals have never received training on learning disabilities, and almost half believe that has contributed to avoidable deaths. Beyond nurses and doctors, we need to train NHS workers such as receptionists and facilities managers on how small adjustments can hugely increase access for disabled and autistic people.

I am grateful for the opportunity to open this debate on behalf of the Petitions Committee. Paula McGowan’s powerful testimony shines a clear light on what needs to be done. The case is clear. We cannot risk any more cases like Oliver’s. This cannot afford to wait.

--- Later in debate ---

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

It is a pleasure to serve under your chairmanship, Dame Cheryl. I pay tribute to my hon. Friend the Member for Cambridge (Daniel Zeichner) for a moving and harrowing account of what happened to Oliver, and to the hon. Member for Kingswood (Chris Skidmore), the local MP, who has campaigned tirelessly on this issue.

I also pay tribute to Paula McGowan, who has shown such bravery in campaigning for her son. She and her family have felt such suffering following the death of Oliver nearly two years ago—I cannot imagine the pain of losing a child. I speak for all Members when I say that our thoughts are with her and her family.

The cross-party support for the petition shows the strength of feeling of all Members of this House, who want those with learning difficulties and disabilities to receive the best possible treatment. We all want to see NHS staff equipped to make the adjustments that so often prove the difference between life and death. I am sure the Minister agrees.

It is welcome that the Government are acting broadly in line with the recommendations of the learning disabilities mortality review. However, I felt their response fell short in one particular area. Page 19 refers to the introduction of an oversight group that allows for the input of self-advocates. That is positive, and I welcome that, but the response does not spell out how success will be measured, how targets will be checked, who will decide on service changes, nor how the implementation of changes will be assessed. More effective training programmes, such as those demanded by this e-petition, are developed and led by those with learning disabilities. The Government could have been more explicit in acknowledging that.

I want to speak about Treat Me Right: an inspirational autism and learning disability awareness training programme operating across north-west London and in my constituency. For Members and those in the audience who have not heard of it, Treat Me Right has been running for 25 years. It is delivered by Certitude, a not-for-profit social care provider. The programme was commissioned by the north-west London collaboration of clinical commissioning groups last year, following a grant from Health Education England.

Although reducing the number of avoidable deaths will require a broader strategy, Treat Me Right’s impact is beyond doubt. Having been co-founded by those with learning disabilities, it is now led by people with learning disabilities. It provides essential support for A&E staff, mental health teams and the London ambulance service.

Between June 2017 and March 2018, Treat Me Right trained 942 healthcare practitioners across north-west London in learning disability and autism awareness, and it will train an additional 800 NHS autism champions by the end of this year. The statistics do not tell the full story of the programme’s success, but they do go some way to explain why I and other MPs nominated it for the care and compassion award at this year’s NHS 70 awards.

There are two clear components in the petition’s demands for NHS staff to receive mandatory training: first, the need to pinpoint critical reasonable adjustments for patients with learning disabilities; and secondly, the need to alter a damaging culture that fails people with autism or learning disabilities, preventing them from receiving the treatment they need. On that, Mencap’s statistics are striking: just under two thirds of healthcare professionals—64%—said that a lack of practical resources for them and their colleagues contributes to the problem of avoidable deaths. That is shocking. Just over a quarter say that negative attitudes towards those with autism might also be a contributing factor.

Programmes such as Treat Me Right are proving to be an effective remedy. Trainers explain clearly how autism or their own learning disability feels for them, so NHS staff can learn about uniquely challenging situations that may arise during the course of their work. In addition to training, the programme offers two tailored health toolkits for people with autism—health action plans and health passports—which are essential for signposting the critical adjustments necessary on their arrival at A&E and other departments.

The Government’s response to the review talks of ensuring

“vigilant and proactive support for people with a learning disability.”

How better to achieve that than through mandatory training, and who better to lead that training than those who know the specifics of living with autism or a learning disability?

I welcomed John, a co-founder of Treat Me Right, to Parliament earlier in the year. He felt strongly that the training programme allowed him to share his experience of living with Down’s syndrome with NHS professionals, to tangible effect. His experience is reflected in the comments of healthcare professionals across Hampstead and Kilburn who have benefited from training by Treat Me Right. The team at Brent psychological services said that the training, especially on autism spectrum disorders, was like

“receiving a pair of glasses after not knowing you needed them”.

Such testimonies, and the fact that approximately 3,300 adults are registered with Brent CCG as having been diagnosed with a learning disability, mean that the work of Treat Me Right could eventually offer vital healthcare support to thousands of my constituents who have been suffering for years.

[Kerry McCarthy]

It sounds like a fantastic organisation. I wonder whether those lessons could also be rolled out to other public services. I have been talking to Avon and Somerset police, where there have been issues about tasering people who clearly should have been treated differently. Does my hon. Friend agree, particularly as the criminal justice system and the police often come into contact with people with autism and do not know how to treat them?

[Tulip Siddiq]

I absolutely agree with my hon. Friend that the issue is not confined to the healthcare services. It crosses borders, and she made an effective point about the police and others dealing with the challenges of autism that arise in everyday life.