Oral Answers to Questions

Alex Burghart Excerpts

Tuesday 15th January 2019 Commons Chamber

[Mike Wood (Dudley South) (Con)]

14. What steps he is taking to increase support for people with autism and learning disabilities.

[Alex Burghart (Brentwood and Ongar) (Con)]

24. What steps he is taking to increase support for people with autism and learning disabilities.

[The Minister for Care (Caroline Dinenage)]

Autism and learning disabilities are clinical priorities in the NHS long-term plan. We are committed to improving the quality of care provided to people with a learning disability or autism and to addressing the persistent health inequalities they face.

[Caroline Dinenage]

I congratulate my hon. Friend on his active involvement in the all-party parliamentary groups on learning disability and on autism. Over the next three years, we will be testing and implementing the most effective ways to reduce waiting times for specialist services. We are developing guidance to support commissioners to develop the necessary services to support all autistic people, and we have launched a review of our autism strategy.

[Alex Burghart]

As a former governor of a school for children with autism, I thank the Minister for her response. It is well known that people with ASD suffer premature morbidity due to worse rates of heart disease, cancer and death through epilepsy. What is the Minister doing to ensure that fewer people with autism die early?

[Caroline Dinenage]

These are key elements of the NHS long-term plan, and we will shortly start consulting on mandatory learning disability and autism training for health and social care staff. We will work to improve uptake of the existing annual health checks for people with learning disabilities and will pilot the introduction of specific health checks for autistic people.

Health and Social Care (National Data Guardian) Bill

Alex Burghart Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Alex Burghart (Brentwood and Ongar) (Con)]

It is a pleasure to speak in support of this extremely important private Member’s Bill. To pick up where my hon. Friend the Member for North Devon (Peter Heaton-Jones) left off, data—data ownership and storage—is one of the big questions that society and this House will have to grapple with in the decades to come. I have noticed when talking to younger constituents how increasingly aware they are of where their data on social media goes and, most importantly, who the owner of that data is. Does the owner remain the subject of that data, or does ownership transfer to whoever is holding it? These are important conceptual issues that I am sure the House will have to continue to grapple with in the years ahead, and I am pleased that my hon. Friend the Member for Wellingborough (Mr Bone) has contributed to us moving in this direction.

I first had to come to terms with issues around personal data when I went into public policy research about 10 years ago. Two things became immediately clear. First, although the Government were collecting a lot of data on individuals, the way that they felt obliged to keep that data meant that they were extraordinarily bad at joining it together. We had very good information on children, for example, but rather lousy information on families. Building that context around an individual is absolutely vital if we are to build a decent series of research questions and answers that allow us to interrogate the causes of particular problems, or to see what positive influences in somebody’s life might have led them to avoid certain problems.

On a professional level, although the Bill does not deal with children’s data—children’s safeguarding is covered by different legislation—when I worked on child protection I saw powerfully the consequences of poor data sharing and safeguarding services. I read a large number of serious cases reviews that were published in the event of a child being killed or suffering serious harm, and time after time the findings of those serious case reviews were that agencies had failed to share data at key moments. Time and again, recommendations were made that better information sharing procedures should be created. We had a series of organisations which, albeit with the best intentions, were in effect working in silos, and by not working together they were missing opportunities to protect children, and in some cases to save their lives. That reluctance to share data was not laziness or professional neglect; it was often because agencies were scared of the potential legal consequences of sharing private information with other professional bodies.

[Mr Jim Cunningham (Coventry South) (Lab)]

The hon. Gentleman is making a good point. Over the past two or three years we have had this problem of child abuse and so on. One thing that struck me is the fact that agencies do not co-operate with one another or share information in the way they should. As a result, something that could be prevented is not prevented. Does the hon. Gentleman agree?

[Alex Burghart]

I absolutely agree, and I am grateful to the hon. Gentleman for that important intervention. If we create a framework that helps agencies to share information about vulnerable individuals safely, that enables those agencies to become greater than the sum of their parts, and to combine and enhance their professional interrogations, so that they can join the dots and create a true picture of what is happening in someone’s life.

As I saw earlier in my career, however, if done incorrectly such an approach can be taken to dangerous lengths. In about 2008-09, the Government proposed to create a service for children called ContactPoint. The programme was well intentioned, and it intended to bring together all the information on all children in one single place. However, it would have given access to that information to around 350,000 professionals nationwide, and civil rights campaigners immediately became concerned that that would effectively put all information about all children into the public domain, that it would not take long for that information to be out in the public space, and that once there, the process would be irreversible.

Today we are seeing exactly the right civilised and sophisticated approach to data handling. As I understand it, the National Data Guardian will work with professional bodies to ensure that they understand what they can do. She will be in a position to work with the public and ensure that they understand how their data is shared, and how it might be shared in future in order to improve services. Like my hon. Friend the Member for Wellingborough, I believe that the National Data Guardian will ultimately help people to choose whether they want their data involved in this sort of analysis.

I draw the House’s attention to a very significant initiative taking place in New Zealand. Using this sort of sophisticated data handling arrangement, the New Zealand Government have built the Integrated Data Infrastructure, which brings together pretty much all public, and some private, data held on individuals. It combines it by creating unique identifying numbers for each individual, taking out their names so that all records become anonymous, and then matching the data. This is done in a way that prevents track-back to the individual, while allowing large amounts of interconnected and complex data to be analysed by researchers, so that they can better understand the causes of social complex problems and how it is that some individuals with similar characteristics do not suffer from the dangerous long-term outcomes that some of their peers do.

This is groundbreaking stuff. The fact that the New Zealand Government have managed to do it in such a way as to take the public with them to create a world-class research resource gives us all hope that it can be done. When I talked to the people who lead the project in Wellington, I asked them how they got over the public’s concerns. They said that when they first took it to public consultation a lot of the public said that they rather assumed their data was being used for decent purposes already and found it very strange that their private data was not being used anonymously to solve the big health questions and social problems of the day. Yes, they wanted guarantees that their private information would not end up in the public sphere, but they said, “For goodness’ sake, get on with it.” I think there is a very important lesson for us all in that.

I very much hope the Minister will take a moment or two in her remarks to reflect on how the National Data Guardian may be able to help us in our jobs as MPs. As Members, we often have to handle sensitive information, and we are often responsible for the exchange of sensitive information. I therefore believe the National Data Guardian will perform a service to this House in due course. I am absolutely delighted to support the Bill.

Gosport Independent Panel: Publication of Report

Alex Burghart Excerpts

Wednesday 20th June 2018 Commons Chamber

[Mr Hunt]

Absolutely. One of the big lessons from this report is that we have to look at systemic issues as much as at the practice of an individual doctor or nurse.

[Alex Burghart (Brentwood and Ongar) (Con)]

I congratulate the Secretary of State and the right hon. Member for North Norfolk (Norman Lamb) for getting us to this point. I was deeply concerned to hear in the Secretary of State’s statement that Ministers had been given advice not to proceed with this independent panel. Is the Secretary of State convinced that Ministers are now receiving better advice?

Autism

Alex Burghart Excerpts

Thursday 29th March 2018 Commons Chamber

[Dame Cheryl Gillan]

I agree entirely. The right hon. Gentleman shows that there is great understanding of the issue on both sides of the House.

Some 60% of employers worry about getting support for an autistic employee wrong, and 60% of do not know who to ask for advice or support about employing an autistic person. Given the huge success of the Government’s Access to Work programme, it is a real shame that there is not better awareness of it among employers. I want to hear about that from Front Benchers. The NAS recommends that we ensure that Jobcentre Plus staff, work coaches and disability employment advisers all receive training in how to deal with autistic people.

[Alex Burghart (Brentwood and Ongar) (Con)]

Will my right hon. Friend give way?

[Dame Cheryl Gillan]

This really is the last time.

[Alex Burghart]

I apologise to the House that I am losing my voice. My right hon. Friend is being extremely generous with her time. She quite rightly points out that Access to Work is a valuable initiative that helps people, but in my experience it helps people once they already have a job. Does she agree that it would be wonderful if that sort of initiative and expertise were brought forward to help people with autism to prepare for work so that they were less intimidated by applying for jobs?

[Dame Cheryl Gillan]

I am also afraid that I am slightly losing my voice; I am sounding a bit Fenella Fielding. It is important that the Government promote the positives of employing autistic people and ensure that advice about supporting autistic people at work is made available to employers.

In the recent Command Paper “Improving Lives: The Future of Work, Health and Disability”, the Government acknowledged that autistic people were one of the groups that struggled most with employment. I would welcome the Minister addressing this point when she winds up, as well as giving us an update on the potential progress towards putting autism into the labour force survey, which would be an important step.

I want to touch on three other points: criminal justice; diagnosis waiting times; and access to democracy. The subject of people with autism in the criminal justice system does not often get the profile that it deserves. Because of the nature of autism, autistic people can find themselves being caught up in the criminal justice system inadvertently. We need to work hard to ensure that we are doing all that we can to support people not to enter the system in the first place, and we also need to get it right by ensuring that we do the best we can by those people when they do enter the system.

I have always been very impressed by Feltham young offenders institution, which has achieved accreditation from the NAS as an autism-friendly institution. I understood that 20 other prisons were going through accreditation. Will the Minister update us on what is happening with the autism accreditation system? Furthermore, we would like to see training for professionals across the criminal justice system. Will she take that point on board and give us an update on what progress the Government are making? The APPG will be launching a call for evidence on criminal justice over the next few weeks and I urge every Member of this House to get in touch with the secretary of the group if they have case studies and examples of autism and the criminal justice system to share.

As the hon. Member for Alyn and Deeside (Mark Tami) mentioned in his intervention, waiting times for diagnosis are critical. Diagnosis is a critical milestone for people on the spectrum, but individuals are having to wait far too long for an autism diagnosis. Research by Goldsmiths and City, University of London, shows that the average wait for children for an autism diagnosis is over three and a half years, while adults receive a diagnosis after around two years. The Government have committed to record and publish waiting times. Recording will start in April and publication will begin next year. That is incredibly important, and I hope that the Minister will update us on that.

Finally, I want to talk about autism and access to democracy. I sit on the Public Administration and Constitutional Affairs Committee, and our inquiry into the work of the Electoral Commission has just touched on this subject. Research suggests that voter turnout among those with a disability is much lower than that of the general population, and the Government, rightly, have a duty to close that gap and ensure that everyone is able to cast their vote. There are special access requirements around buildings, and the Government also commission guides on voting for people with different disabilities, such as those with a learning disability. However, I would welcome clarity from the Government on whether the adjustments that autistic people may need are considered in the Electoral Commission guidance, and on whether the Government are planning any autism-friendly guides for voters on the spectrum.

Autism affects so many areas of government that it is difficult to address them all in one speech. I am being held to about 15 minutes, but I could stand here for the next half hour and opine on where we need to go, what is happening, and where we need to have the drivers.

I want finally to return to World Autism Awareness Week and the reason why we are all here today. Autistic people tell the National Autistic Society that the thing that would make the biggest difference to their day-to-day lives would be if people understood autism. I have a personal aim that all those who play a role in public services, no matter where in this country, should be trained to appreciate the challenges faced by autistic people in the workplace, in schools, on public transport, and in other public places. If we all show just a little more awareness of how autism can affect others, we can make great strides in making autistic people feel at home and more welcome in all our communities.

 Orkambi and Cystic Fibrosis

Alex Burghart Excerpts

Monday 19th March 2018 Westminster Hall

[Paul Scully]

I clearly do not have the figures that may have been done on the economics, but I know there is a test, which I will talk about later, in which the treatment falls between two stools. In effect, the system does not suit this kind of condition. It suits acute conditions far better—I will come to that shortly.

[Alex Burghart (Brentwood and Ongar) (Con)]

My hon. Friend is being extremely generous with his time. Is it the case that this treatment might prevent certain conditions from escalating, and so prevent people from having to move on subsequently to more expensive treatments?

[Paul Scully]

It is exactly the case—there is no doubt about that. There are many people in the Public Gallery whose children are sufferers from cystic fibrosis. When I was at the Cystic Fibrosis Trust last week, I could not meet many sufferers, because they cannot be in the same room due to the risk of infection. As my hon. Friend says, cystic fibrosis can escalate quickly, and the more we can treat the underlying causes, which Orkambi and subsequent drugs will allow us to do, the better.

Mental Health Act: CQC Report

Alex Burghart Excerpts

Tuesday 27th February 2018 Commons Chamber

[Jackie Doyle-Price]

The first thing I would say to the hon. Gentleman is that I am not pretending that everything is rosy. One of the reasons we are making this such a priority is precisely because it is not, and we are determined to deliver improvement. He mentions the DWP, but I do not think that we should write people with mental illness off and say that they can never work again. It is in that spirit that we are working with the DWP to look at where we can help people, through person-centred interventions, to get back into work if they are able to do so. That is exactly what we are doing, and I hope that it will become very successful.

[Alex Burghart (Brentwood and Ongar) (Con)]

Obviously, the CQC report will help to inform a lot of ongoing Government work. With that in mind, will the Minister assure the House that Sir Simon Wessely’s review will look at the concerns of people from ethnic minority communities, who have particular issues with detention at the moment?

[Jackie Doyle-Price]

I can give my hon. Friend that assurance. The increased prevalence of people with a black background being detained is very much part of Sir Simon’s review.