Autism

Debate between Cheryl Gillan and Jim Cunningham

Thursday 29th March 2018 Commons Chamber

[Dame Cheryl Gillan]

The hon. Gentleman makes a valid point, and I will come on to diagnosis a bit later in my speech.

May I put it on record that while many people associate autism with mental health, it is in fact a developmental condition—a lifelong developmental condition—and not necessarily a mental health condition? Autistic people are as likely to suffer from a mental health problem as anybody else—any neurotypical person. I really want to make sure that nobody in this House ever confuses that, and I hope that that puts the record straight.

I wish to touch on the Autism Act 2009. Almost 10 years ago, I was very privileged to draw No. 1 in the ballot for private Members’ Bills and then to take through the Bill that became that Act. We are coming up to the 10th anniversary of the Act, which is really important. A key element of the Act was to mandate the Government to produce an adult autism strategy, and the 10-year anniversary will coincide with a year in which that strategy is up for review. The all-party group is working towards holding to account every Government Department involved, and making sure that their feet are held to the fire, because this affects almost every area of public life and public policy. Ahead of the review, I want all areas of our Government to consider how they can better support people with autism and people on the autism spectrum.

It is also important to look at the good that that Act has done. Almost 10 years on, the National Autistic Society had a look at this, and it is worth reflecting on the fact that autism really is on the agenda now for an awful lot of people, and locally as well. Almost everyone is aware of autism. NAS polling showed that 99.5% of people were aware of autism, and almost every council—93% of them—has an autism lead.

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

The right hon. Lady does the House a great service by bringing forward this debate on autism. Can she tell me—perhaps she does not have the figures—about employers’ attitude to employing people with autism? Are there any statistics on that?

[Dame Cheryl Gillan]

The hon. Gentleman anticipates another bit of my speech. That is really important, because people with autism are disproportionately not being taken off the unemployment register. In fact only yesterday, with the all-party group for disability, I had a joint meeting with the Minister for Apprenticeships and Skills to look at the problems and consider how, working with employers’ organisations and the Government, we can try to improve the situation.

More councils now include autism in their joint strategic needs assessment, and almost every local area has a diagnostic pathway—those that do not will know who they are, but all but three are covered. That is really significant progress, but let us face it there is not a person in the House who does not know that we need to make more progress in this area, so I do not say that with any sense of complacency whatsoever.

I want to touch on a few areas, but I have only limited time. I have been very impressed by the number of Members on both sides of the House who have put in to speak, and it is really important that I hear from them.

I will start by talking briefly about education. My hon. Friends the Members for Bexhill and Battle (Huw Merriman) and for Lewes (Maria Caulfield) recently chaired an inquiry into autism and education under the umbrella of the APPG. They did some fantastic work, looking at how the education system in England currently works for children. The inquiry involved evidence sessions and surveys, and took additional evidence from more than 3,000 parents, professionals and people on the autism spectrum. It found that children are being held back from achieving their full potential because they are autistic. In our surveys, nearly 70% of parents told us that they had waited for more than six months for support at school, and 50% had waited for more than a year.

Preventing Avoidable Sight Loss

Debate between Cheryl Gillan and Jim Cunningham

Tuesday 28th March 2017 Westminster Hall

[Mr Cunningham]

The hon. Lady’s pronunciation is not as bad as mine. I would support a national strategy. More importantly, however, the cost of drugs for treatment is an area that creates difficulties. In 2014-15, the cost of two drugs alone to treat age-related macular degeneration was £287 million. There is room for discussion between the Government and the drug companies on the cost of drugs to treat people with eye problems.

[Mrs Cheryl Gillan (in the Chair)]

Order. I gently remind Members that interventions are supposed to be short. We seem to have plenty of time, but we have quite a few speakers, so I would like interventions to be short.

High Speed Rail (London - West Midlands) Bill

Debate between Cheryl Gillan and Jim Cunningham

Monday 20th February 2017 Commons Chamber

[Mrs Gillan]

My right hon. and learned Friend intervenes from a sedentary position, and he is right that this is an anti-land grab amendment.

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

I, as much as anybody else, have supported the right hon. Lady for a long time in respect of this scheme, and she raises an important point. I have constituents who cannot get a penny of compensation because they do not meet the necessary requirements. I think something very serious should be done about that, and I hope the right hon. Lady agrees.

[Mrs Gillan]

I thank the hon. Gentleman for that intervention, and this is what has worried me about this project: it has been a David and Goliath project, and Goliath has won. It has crushed the spirit of so many people, and it is going to affect people who do not yet know how they are going to be affected. I worry for the years of disruption that will come, as I will discuss later.

Amendment 7 will improve the reporting on vocational qualifications, but when it comes to personnel—this is an amendment about personnel—a project such as this should have had continuity and strong leadership. Far from that, there have been three Prime Ministers, five Secretaries of State, four permanent secretaries and three chief executives over the past six years. Young people joining this project to obtain the vocational qualifications that amendment 7 reflects will want assurances that the personnel and training functions are being run by reputable contractors and a reputable organisation.

Questions are being asked about the relationships between the Department, HS2 and contractors such as CH2M. CH2M has already been paid hundreds of millions of pounds of taxpayers’ money in connection with this project and its director has been placed in temporary charge since the very highly paid Simon Kirby departed to Rolls-Royce. It has had so-called Chinese walls during the latest bidding process and now another director of the same company has been appointed as the new permanent CEO on less money than the departing CEO.

We read reports in the Financial Times this morning that the losing bidders on phase two are considering legal action because CH2M could well have been party to information from the CH2M professionals embedded in HS2 on phase one. I ask the Minister to clarify this: he needs to give assurances, or else the pall of suspicion will continue to hang over the top personnel of this project and will affect those young people referred to in amendment 7, whose vocational qualifications are going to be reported on.

Cystic Fibrosis

Debate between Cheryl Gillan and Jim Cunningham

Tuesday 8th December 2015 Westminster Hall

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is a pleasure to serve under your chairmanship, Sir Edward. I warmly welcome the Minister, who, I am afraid, is very familiar with what I am speaking about today; I hope he gives me an A for effort and persistence. Given that we have spent so much time discussing access to Translarna, perhaps in his winding-up speech he will have some good news for me and my constituent.

I congratulate the hon. Member for Dudley North (Ian Austin). I am absolutely delighted that he secured this debate on access to medicines for people with cystic fibrosis and other rare diseases. Like me, he knows how important this issue is for families up and down England. I have been looking at the issues surrounding Duchenne muscular dystrophy for what seems like many years—in truth, it has been for just over a year. Only 90 boys affected by the disease in England are eligible for this drug, and the number is slightly larger across the whole of the United Kingdom.

Duchenne muscular dystrophy is a devastating condition that leads to full-time wheelchair use between the ages of eight and 11. It is a progressive, muscle-wasting disease that eventually affects the muscles involved in the respiratory and cardiac functions. Sadly, few with the condition live to see their 30th birthday. I have been working with Muscular Dystrophy UK, which fights causes to do with muscle-wasting conditions. I pay tribute to that organisation for all the support and help it gives. It not only informs Members of Parliament, but helps people affected by those diseases. My constituent, young Archie Hill, is an inspiration to everybody in this area. He has been campaigning for many years, and he and his family are indefatigable in their efforts to get the right medicine at the right time to these boys.

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

I congratulate my hon. Friend the Member for Dudley North (Ian Austin) on securing this timely debate. As the right hon. Member for Chesham and Amersham (Mrs Gillan) will recall, some months ago we all went to Downing Street to petition to get something done about muscular dystrophy. I am sure she would agree that one of the big problems is that even if the new treatments are okay, there is always a long run-in, in which negotiations take place between the Government and the pharmaceutical companies.

[Mrs Gillan]

The hon. Gentleman is absolutely right. I pay tribute to the other colleagues in the House who took part in that petition. That truly cross-party effort aimed to draw attention to the drugs that are not readily and fully available to our constituents. I was grateful that it was a cross-party delegation, because such things are much stronger when they take place in an atmosphere of good co-operation across the board rather than a political atmosphere. We saw parliamentarians at their best, so I thank the hon. Gentleman for attending that lobby at No. 10 Downing Street, which was inspired partly by Muscular Dystrophy UK and partly by the families it supports.

The issue for me is the drug that the hon. Member for Dudley North referred to. Translarna is its trademark name; it is called ataluren. It is produced by a company called PTC Therapeutics, which calls it its “lead product candidate” for these disorders. I know that the Minister is familiar with PTC Therapeutics, and I hope that in his winding-up speech he will refer to any contact he has had with the company. One of the issues surrounding the efficacy and licensing of the drug is the cost, so I hope the Minister will update us on that situation.

PTC Therapeutics states that the drug is a

“novel, orally administered small-molecule compound for the treatment of patients with genetic disorders due to a nonsense mutation. Ataluren is in clinical development for the treatment of Duchenne muscular dystrophy caused by a nonsense mutation…and cystic fibrosis caused by a nonsense mutation…Ataluren was granted conditional marketing authorization in the European Union under the trade name Translarna”.

I believe that it is already available in France, Germany, Italy and Spain. It is the first treatment approved for the underlying cause of Duchenne muscular dystrophy, which is a complicated condition.

Nonsense mutations are implicated in a variety of genetic disorders. They create a premature stop signal in the translation of the genetic code contained in the mRNA. That prevents the production of full-length, functional proteins. The company says that

“ataluren interacts with the ribosome, which is the component of the cell that decodes the mRNA molecule and manufactures proteins, to enable the ribosome to read through premature nonsense stop signals on mRNA and allow the cell to produce a full-length, functional protein. As a result…ataluren has the potential to be an important therapy for muscular dystrophy, cystic fibrosis and other genetic disorders for which a nonsense mutation is the cause of the disease.”

The importance of access to Translarna cannot be overstated. Boys such as my constituent Archie Hill have been waiting since August 2014 for a decision on whether Translarna will be approved in England. As I said, it is the first licensed drug to tackle an underlying genetic cause of Duchenne’s. It would help to keep Archie and these other boys walking for longer and potentially delay the onset of the devastating symptoms affecting the heart and lungs that I referred to earlier.

NICE’s appraisal of the drug is ongoing, but the families have not yet been made aware of when guidance will be issued, leaving them facing an anxious wait over the Christmas period. Over the time I have known Archie and his family, I have seen his mobility decrease; it is depressing to see such an active, energetic, lively, intelligent young man, who has his life before him, being denied a drug that could well keep him active for longer and improve his quality of life.

High Speed 2 (Compensation)

Debate between Cheryl Gillan and Jim Cunningham

Tuesday 21st October 2014 Commons Chamber

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I am grateful for the opportunity to raise the issue of compensation for those adversely affected by High Speed 2. I thank colleagues for being here alongside me, as well as those who were unable to attend but have contacted my office. Since its announcement, and in common with others such as my right hon. Friends the Members for Aylesbury (Mr Lidington) and for Buckingham (John Bercow), I have received numerous representations from people affected by HS2. The theme, I am afraid, is a common one: despair at the current compensation arrangements and a feeling of powerlessness from people who think they cannot influence the process.

Since HS2’s announcement, I have consistently pushed for a fair and generous compensation package. Sadly, despite six public consultations and four years of anxiety for my constituents in Chesham and Amersham and for other colleagues’ constituents, the current proposals for compensation remain as inadequate as ever. However, before the Government’s announcement of their response to the latest consultation, I wanted to give the Minister one more chance finally to listen to people and to put things right.

There have been promises from Ministers. The overriding principle of this project ought to be that no one should have to suffer a financial penalty or be trapped in their home because of HS2. That view is shared by many of us, including my hon. Friend the Member for Ruislip, Northwood and Pinner (Mr Hurd), who is currently on paternity leave but who would otherwise have been present. Unfortunately, the reality shows that that is not the case. Some properties have been on the market for years, and people are trapped and unable to move on with their lives.

Notwithstanding those ministerial promises, the compensation schemes to date have been woefully derisory, and people are facing substantial financial loss. The Transport Secretary promised that compensation would be “full and fair” for “those most directly affected”, and the Prime Minister told me personally that compensation schemes would be “generous and fair”. Given that other major infrastructure projects are in the pipeline, it is time for a rethink on compensation. I hope that the Minister will respond positively, with the aim of introducing fairer arrangements.

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

I appreciated the fact that when members of the HS2 Committee visited Coventry and Kenilworth, they allowed me to accompany them and explain the situation to some of my constituents. As for the question of negative equity—I know that the right hon. Lady will agree with me about this—some people in the Coventry area who have invested their life savings will not qualify for any form of compensation.

[Mrs Gillan]

The hon. Gentleman has made a very valid point, and I shall say more about it shortly.

There are problems with the current compensation proposals. They will compensate only about 2% of those who live within 1 km of HS2, or within 250 metres from a tunnel. As the hon. Gentleman has just pointed out, despite widespread evidence of blight, the vast majority of people affected by HS2 will not be compensated fairly, because the Government have consistently linked the scheme to distance from the line and have ignored the wider effects. HS2 Action Alliance has calculated that only about 172,000 people will receive any kind of compensation, although more than a million live within 1 km of HS2 and many are being adversely affected.