World Autism Awareness Week

Tom Tugendhat Excerpts

Thursday 28th April 2016 Commons Chamber

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

I, too, would like to add my voice to the clamour—the chorus—of appreciation to the right hon. Member for Chesham and Amersham (Mrs Gillan) not just for securing this debate, but for all the work she has done in this area over the years.

This subject is very close to my heart. I speak as a former teacher of English for more than 20 years who witnessed at first hand some of the challenges and obstacles that young people living with autism face. This debate is important not just because of the challenges that those living with autism have to cope with, but because of the isolation and the sometimes bullying and judgmental attitudes they face from a society that too often simply does not comprehend the condition. That is why we all—there is consensus on this—need to work hard to raise not just awareness of the condition, but understanding of it. In the long term, society’s lack of understanding can leave an individual with autism emotionally scarred, and in the longer term it can lead to difficulties accessing employment and the means to a fulfilling life.

The scale of those affected by the condition is significant. It is thought that more than one person in every 100 may be autistic, and behind each individual case, as we have heard, are families, loved ones and friends who also live with the condition. A study in 2008 revealed that as many as 71% of children with autism also live with a mental health condition, such as anxiety, depression or obsessive compulsive disorder. The Association of Graduate Careers Advisory Services found that 26% of graduates on the autism spectrum are unemployed. That is by far the highest rate of any disability group and more than double the average unemployment rate for disabled adults. Although figures are hard to establish, it is thought that only 15% of autistic adults in the UK are in full-time work. A large-scale study in The British Journal of Psychiatry in November 2015 found that people with autism are more than twice as likely as their peers in the wider population to die prematurely.

It is important to recognise, as we have heard today, that no two people with autism are the same. There is a whole spectrum within the condition, which may explain the gaps in the understanding of it among the wider population, but we know that it can be quite debilitating for the individual involved, as well as his or her family, if they suffer from it with any severity. Progress has been made, but it is important that as much work as possible continues to be undertaken to promote, as I have said, not only awareness but understanding. Recent work undertaken by the National Autistic Society found that only 16% of autistic people and their families felt that the general public had a meaningful understanding of the condition.

I believe that folk, on the whole, at heart are decent. If we can help to raise awareness and understanding of the condition—this debate is a small part of that—the wider public will display more sensitivity, more kindness and more compassion towards those living with this condition.

[Tom Tugendhat (Tonbridge and Malling) (Con)]

I welcome the hon. Lady’s speech, and she speaks with great passion and eloquence. Does she also welcome the fact that schools do so much not only to improve the understanding in the local community, but to help their children who are on the autism spectrum to interact with the world as it is? Much is being done by schools such as Grange Park School in my constituency and, I am sure, by schools in the hon. Lady’s constituency.

[Patricia Gibson]

I take on board the hon. Gentleman’s important point. We have heard today that in some schools, there is a deficit of understanding and a deficit of support, but there are also excellent examples of teachers who have had thorough training in autism, who can support children in a specialised way and help them to access the curriculum in a meaningful way that would not otherwise be possible. We must recognise that and share such good practice, wherever it exists, around the UK.

When we raise understanding of autism, we will help to remove the shadow of loneliness and isolation that, far too often, those living with autism and their families experience. Loneliness and isolation have a negative impact on the general health and wellbeing of those affected by them, and loneliness is considered to be as damaging to health as smoking. That brings into sharp focus the importance of such work.

Before I finish, I want to pay tribute to the work that is being done in in my constituency. During the Easter recess, I attended an event in Ardrossan library—I attended a similar event last year—where people with autism and their families come together to share stories about the challenges that they face and the coping strategies that they use. I pay tribute to Suzanne Fernando, who organises those events and does so much to promote understanding of autism. I am quite proud of the work that is going on in Scotland. The Scottish Government have launched the Scottish strategy for autism, through which they have put the issue on the agenda, raised awareness of it and put resources into it. When children, young people and adults with autism lose out, they are a loss to our society, and we need to be more inclusive and mindful of that.

Autism Diagnosis Waiting Times

Tom Tugendhat Excerpts

Tuesday 8th March 2016 Westminster Hall

[Jo Cox]

I agree entirely. It is time for the Government to bring a wider discussion about autism services to the Floor of the House.

My local authority’s announcement last Friday now means that we will quadruple the number of diagnoses that can take place in my constituency. It still needs to redesign the service in a way that prevents future backlogs, but this is good news for Batley and Spen and for people across Kirklees. However, it should not go unacknowledged that local authorities such as mine are working hard to reform services in an environment of severe and disproportionate budget constraint, imposed on them by Government. Of course, this is just one local authority; what about the hundreds of others and the desperate families in their care?

We also now have to accept that this failure to diagnose autism early ends up costing taxpayers much more. When developing its guidance for health services, NICE stated:

“Investment in local autism services also contributes to: a reduction in GP appointments, fewer emergency admissions and less use of mental health services in times of crisis, including the use of inpatient psychiatric services.”

[Tom Tugendhat (Tonbridge and Malling) (Con)]

The hon. Lady speaks with great power and passion. I support her absolutely and thank her for securing this debate. In my own constituency, the Grange Park School, which I have often visited, specialises in autism care. The school’s view is that proper care and diagnosis relieves the burden on the police, who are often called in to deal with situations that are not policing matters and not for the judicial system, but for the mental care system, and, if handled properly, for the education system.

[Jo Cox]

The hon. Gentleman makes a fascinating and pertinent point, particularly as we heard about a case this morning that was very tragic and relates to some of the themes he has raised. I know he is personally committed to this issue, and it would be good to have a response from the Minister on his point.

The National Autistic Society tells us that by investing in autism diagnosis, the NHS could save the enormous amounts of money currently spent on mental health services that result from autistic people not getting the support that they need, as they have not got a diagnosis. As well as having negative consequences for someone’s life, acute services are also very expensive, with in-patient mental health care costing between £200 and £300 a day. In other words, the annual cost of supporting two people with autism in a mental health ward would fund a specialist autism team serving an entire borough for a whole year.

Furthermore, identifying and supporting someone on the autism spectrum can save money in the wider public sector. According to the National Audit Office, an 8% identification rate would save £67 million a year. Over the five years to 2020, that is a potential saving to the public purse of £337 million.

[Tom Tugendhat]

We rightly look at pounds, shillings and pence when we talk about the public purse, but does the hon. Lady recognise that identifying and supporting autism saves families from failing? The saving to the public purse is significantly greater than the figure she has given, because it relieves the burden on many other branches of public services that would otherwise have to support a failing family.

[Jo Cox]

I entirely agree. The hon. Gentleman makes a very valid point.

Crises in autism services are a decade or more in the making. The blame cannot and should not be pinned on one party or one Parliament, but now that we are more aware of the problem and the scale of it, this Government should be judged on how they fix it.

I urge the Minister, who I know is personally committed to this issue, to agree to implement in full the National Autistic Society’s key recommendations to help tackle the crisis: first, a new requirement on NHS England to collect, publish and monitor data on diagnosis waiting times, including data on how many people are known to their GP to have autism. Secondly, NHS England should ensure that standard waiting times on mental health reflect the NICE national guidance that no one will wait longer than three months between referral and being seen for diagnosis. Finally, the Government must share in this commitment, ensuring that NHS England now meets the three-month target. To help fulfil that aim, access to an autism diagnosis should be clearly written into the Department of Health’s mandate to NHS England, which means that it will be held to account on this target and it becomes a priority to get it right.

Before I finish, I have three additional questions that I hope the Minister will address directly. What steps has his Department taken to ensure that the work done by NHS England’s information board will improve the collection and recording of data on autism in primary and secondary care? Will the Minister ensure that the recommendations in the King’s Fund’s recent report relating to autism diagnosis waiting times are taken forward? Finally, what assessment has the Minister made of the costs to the NHS of failing to diagnose people with autism in a timely manner?

The fundamental question facing us is this: the crisis is now so acute that some desperate parents and individuals are paying for help that by right they should be able to access on the NHS, but what about those without the resources to pay? They are currently left in a distressing and damaging limbo, often for years. I hope for their sake that when the Minister responds we will hear clear, time-bound commitments and actions, rather than vague assurances. I also hope, along with other Members, that he will commit to more time on the Floor of the House to discuss the many challenges facing individuals and families even after they have received a diagnosis.

I pay enormous tribute to the National Autistic Society, whose relentless campaigning continues to raise awareness and continues to press for action on this critical issue. I also pay tribute to all the parents, carers and professionals who support and love people living with autism.

NHS (Charitable Trusts Etc) Bill

Tom Tugendhat Excerpts

Friday 22nd January 2016 Commons Chamber

[Kit Malthouse]

I do not think that I have attached that requirement to this straight appointment. If there are no trustees, who objects to the Secretary of State making those appointments? Can anyone think of anybody better? I certainly cannot. Possibly the chief executive of the hospital, but given that they are probably appointed under the influence of the Health Secretary, why not allow the Health Secretary to do it?

[Tom Tugendhat (Tonbridge and Malling) (Con)]

My hon. Friend is generous in allowing interventions. Barely 150 years ago we abandoned press-ganging for the Royal Navy, yet we are now reintroducing it for the charitable sector. It strikes me as odd not to “encourage” the Secretary of State or chief executive to recruit more trustees, but rather to force them to do so. As my hon. Friend rightly said, trustees are volunteers who step forward and step up for the community. They do something that is above and beyond their social duty every day, and we should encourage them in that. He is right to place such an important weight on that, but I question the legislative requirement of making the Secretary of State able to make those appointments. He seems to be asking not for the Secretary of State to be able to ratify a volunteer, but rather for them to go out and call somebody in from the fields, factories and cities and tell them to take up that position. That is slightly losing the focus. If the Secretary of State is not required to do that, all we need is for people to have the opportunity to volunteer, in which case the chief executive or Secretary of State can merely advertise the post.

[Kit Malthouse]

That is exactly what I am proposing. If there are no trustees for three months, the Secretary of State will have the power to appoint someone. They could run an advert, or decide to press-gang somebody if they want—they can choose their own method. The point is that somebody has to do it.

An interesting technical point that Members who belong to Conservative associations may know is that if an association runs out of trustees its members can appoint a new trustee in a special general meeting. Great Ormond Street charity has no members. There is no group of people who can appoint a trustee, so if it all falls vacant the thing effectively dies. In my view, the amendment is very sensible and I am amazed it is causing such controversy. This very sensible amendment would allow the Secretary of State to appoint one or more trustees to get the thing going again.

--- Later in debate ---

[Kevin Foster]

I thank my hon. Friend for that good point. Once we start on the principle of these changes, where do we stop? Karing, a charity in my constituency—it is in Preston, in Paignton—is very closely linked with a local doctor’s surgery, and it was lucky enough recently to have had its new base opened by Esther Rantzen. It is not, however, part of that surgery. Clearly, the two work together, with Karing supporting and providing great services, giving real benefits to local people, but, crucially, it is not part of the business that is the surgery, nor is it part of the business that is the NHS. That is where the logo point comes in.

[Tom Tugendhat]

My hon. Friend is making a strong, clear point. In my constituency, Edenbridge hospital has a league of friends, which is there not only to support the hospital—it does that incredibly impressively—but to support the needs of the community and to advocate when the hospital gets it wrong, which, occasionally, it may have done. Keeping that independence is essential so that the charity can actually do its job and not merely be an adjunct to the hospital.

[Kevin Foster]

My hon. Friend makes the excellent point that many people will see a league of friends at a local hospital as not just having a function of holding some money in an account, but as also being a stakeholder in the process, able to speak independently and fearlessly about the local hospital and the charities. It needs to be seen as neutral and independent. As we have mentioned, the Public Accounts Committee looked in depth this week at the financial sustainability of NHS trusts. There are concerns about that, and we have seen examples where NHS trusts have gone badly wrong. Thankfully, this Government have been far more prepared to talk about that and deal with it than previous Governments have been. If the charity is seen to be part of the trust, we go back to the idea that the charity is not bringing in additionality. People will think, “I am not donating money so that there is something extra; I am donating money that could or should have been provided by the Government or by the trust.”

If we start spreading the logo around, we open up other debates that are not particularly helpful, as we set a precedent. That was touched on briefly in the intervention by my hon. Friend the Member for South East Cornwall. People are very precious about the NHS—it is a symbol of the public sector, delivered by the public sector. That is a very important point. If we start extending use of the logo to charities, what do we do about other bodies that might wish to start using it? For example, we regularly see the NHS logo used alongside “in partnership”, for example with a foundation trust or the Department of Health, but we do not see groups such as my local league of friends abandoning their long-established and very well-recognised brand within the local area to say that they are collecting for the NHS. The Torbay Hospital League of Friends is doing a great job with its “This is Critical” campaign to get money to help equip the new critical care unit of the hospital, but it is not the NHS, and the essence of that approach is that what it provides is additional and that it is independent. That is why, for me, the amendment would go against the whole spirit of the Bill, which is about independent charities and independent trusts. For me, amendment 9 does not make sense and I will not be supporting it. I hope that my hon. Friend the Member for North East Somerset will not press it to a vote.

Cardiac Screening: Young People

Tom Tugendhat Excerpts

Tuesday 27th October 2015 Commons Chamber

[Mims Davies]

I thank the hon. Gentleman for such an eloquent and kind intervention. I am sorry for his loss. We think of all the children in this debate.

How can it be right to wait for tragedy to strike before taking action? That is truly unacceptable. I urge the Minister tonight to review the policy and to reverse it. As with many other preventable illnesses, screening needs to be part of the standard healthcare provided to our young people. Screening has more than just general benefits: it helps to prevent future diseases. Heart UK estimates that if 50% of people with the potential genetic condition known as familial hypercholesterolaemia or FH—a naturally occurring high cholesterol condition—were diagnosed and then treated, the NHS could save £1.7 million per year on treatment. Truly comprehensive heart screening is a good measure for now and a perfect insurance policy for the future.

[Tom Tugendhat (Tonbridge and Malling) (Con)]

I pay tribute to my hon. Friend for this fantastic opportunity to highlight a major national issue. I also pay tribute to the hon. Member for Ilford South (Mike Gapes) for his courage in intervening to talk about a clearly incredibly fraught moment, not only for him but for his whole family and all who share his grief.

In my constituency recently, a young man was playing football when he dropped dead. Junior Dian, who played for Tonbridge Angels, could have been saved by screening. We are pleased to say that the Under-Secretary of State for Culture, Media and Sport, my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) is working with the Premier League and other organisations to introduce screening for individuals across our country. I hope very much that we will all join her in urging sporting institutions, whether relating to football, rugby or cricket, to push for this opportunity to save young people. Sudden cardiac death hits every part of society. My very dear friend’s brother, the late Earl of Shaftsbury, died in his sleep, aged 30, in New York. This hits everyone: old, young, rich or poor. We can do better. We must do better.

[Mims Davies]

We need to do more on public defibrillators, too.

Dementia Care Services

Tom Tugendhat Excerpts

Wednesday 9th September 2015 Westminster Hall

[Tom Tugendhat (Tonbridge and Malling) (Con)]

I declare an interest as a proud supporter of the Dementia Friends movement, which has done so much in my constituency. I praise in particular Mrs Christine Parker, whose work in bringing the Dementia Friends message to so many in Tonbridge has echoed across other areas. I draw inspiration from her for my remarks, which I hope I can make on her behalf as well.

The rising demand on the NHS in my community is not unlike that in others. One in three people in my constituency is over 65, so the pressure on dementia services is naturally high. Indeed, 1,600 people in my community have dementia, and in the west Kent NHS region, 322 are under 65 and therefore count as young dementia sufferers. As my hon. Friend the Member for Charnwood (Edward Argar) so eloquently put it, when we think about dementia and old people, we usually think about people for whom it is an end-of-life event, but for too many in our society it is not—it is part of life. It is something with which individuals, families and communities—indeed, our whole society—will have to live as they experience this terrible disease.

It is important that we work together, because this is not something that central Government can solve alone; nor, indeed, can the devolved Administrations or local government. It requires a fully joined up approach. The work by a lot of third-sector organisations to bring together the community at all levels has been essential. I particularly praise the organisations working in my part of Kent: Age UK, Crossroads, the Alzheimer’s Society and many care homes.

[Jim Shannon]

In his speech, the hon. Member for Charnwood (Edward Argar) mentioned the need for more research and development. There have been massive steps forward in the development of medication that can delay the onset of Alzheimer’s and dementia in some cases. Although that is a wonderful step forward, the cure is not yet here. Does the hon. Gentleman feel that, along with all the good work that the Government are doing, there should be more partnerships with the pharmaceutical industry to ensure that we can take more giant steps forward?

[Tom Tugendhat]

I can confirm that the hon. Gentleman is not reading my mind—I had not thought of those points. He makes a very important point about tying together with the pharmaceutical industry. I would also urge tying together with universities throughout the country, because many of them across the nation have done incredible work on this issue. I urge my hon. Friend the Minister to look hard at what more can be done to partner up.

Many of the issues have already been covered today so eloquently by Members, so I will just highlight one area that I feel is somewhat tragically overlooked. As we increasingly see younger people suffering from this terrible disease, we must recognise that their needs are different. We are talking about not only old people who may also suffer from other weaknesses and might not be going out as much as they once were, but younger people who rightly expect to enjoy some form of independence in their life. Indeed, through medical treatment, older people are, thank God, much stronger and fitter than they once were and rightly continue to enjoy active lives for longer and longer.

As a society, we should do more to encourage dementia-friendly transport. In my constituency, we have been working towards dementia-friendly communities, whether towns or villages, and we have had some success in different areas. In fact, some places have developed a dementia-friendly high street and various other spaces. Nevertheless, I feel we have not yet got dementia-friendly transport right. Whether we are talking about taxis, buses or trains, the ability to be able to put someone with dementia on a form of transport and know that the people on board will be aware that there might be an issue, allowing people with dementia to maintain some level of independence, is essential if we are ever to achieve the result we wish for: people with dementia living happily and comfortably as part of our society.

Finally, when I learned about dementia, what struck me most was the importance of emotion, which we too often forget when we medicalise and use too much science. When we deal with people in our communities who have dementia, it is important to remember that even if they struggle to understand who we are, the community they are in or the actions they are taking, the one thing that will stay will them, which we must really value, is the emotional response. We must remember that that will live with them for a lot longer than any confusion, and we must make sure that we play our part as individuals—not just as a society—in ensuring that that emotion is positive.