Alpha-1 Antitrypsin Deficiency

Debate between Matt Western and Mark Pawsey

Wednesday 31st October 2018 Westminster Hall

[Mark Pawsey]

Part and parcel of our efforts today is to achieve precisely that. I am delighted that the hon. Lady’s constituent comes to Coventry and is being treated by the excellent services at University Hospitals Coventry and Warwickshire.

Unfortunately, alpha-1 is not yet curable, and no specific treatment for the disease is freely available in the UK; it is a matter of treating only the symptoms with the appropriate therapeutic methods. The hon. Member for Strangford (Jim Shannon) referred to intravenous AAT protein augmentation therapy, which involves replacing the missing AAT protein. That treatment is available in the United States, Spain, Germany and Italy, for example, but it is not yet available in the UK.

The National Institute for Health and Care Excellence—the Government body that produces guidelines on which treatments to make available—only last month published draft guidelines that rejected the use of the only licensed augmentation therapy product in the UK, Respreeza. It has had a UK licence since 2015, but was unfortunately deemed by NICE to be too expensive to be made available on the NHS. We acknowledge that it is expensive; lifelong therapy costs around £60,000 per patient per year. NICE continues to evaluate that and will make its final recommendations next year. The entire alpha-1 community has been heavily involved in pressing the case for patients across the country to be prescribed the treatment.

Only the symptoms of alpha-1 sufferers are treated, often by inhaled medications developed for people suffering from asthma and COPD, rather than specific treatments for the lung damage caused by alpha-1. The other issue is that those who suffer from alpha-1 become susceptible to chest infections, which was certainly the case for Stephen Leadbetter, and it is vital that they are treated quickly with antibiotics at the first sign of infection and are vaccinated every year against flu.

[Matt Western (Warwick and Leamington) (Lab)]

I congratulate the hon. Gentleman on securing this important debate, and I commend the work of the alpha-1 patient community in pressing for it as well. Does he share my frustration that the highly specialised NHS alpha-1 service has been approved and budgeted for and was due to be put in place earlier this year, but may not actually be installed by next year?

[Mark Pawsey]

That is certainly a frustration for the many patients who suffer. I hope that the Minister will address progress towards the outcome that we would all like to see.

There are changes that patients can make to their lifestyle to help to manage the condition, including specific exercise programmes and altering their diets. It is also important for them to avoid being around second-hand smoke and other environmental pollutants, such as open fires, petrol fumes, paint, solvents and dust, and that they avoid coming into contact with anyone suffering from a cold or the flu. However, that is often not enough. There is a need for Government action. We would like the Government to look at the prescribed specialised services advisory group’s recommendations and address the specific recommendation for a national, highly specialised service for patients with severe alpha-1.

A Department of Health and Social Care paper sets it out that that service, referred to by the hon. Member for Warwick and Leamington (Matt Western), should be operational by April 2019, which is only six months away. However, I understand that the formal development of the service has not yet commenced, and that it is highly unlikely that it will be operational by the original deadline.

The need for progress on the service forms one of the two principal objectives of the alpha-1 patient community, and I look forward to the Minister’s commenting on that. The second particular ask is to ensure that alpha-1 antitrypsin augmentation therapy—access to Respreeza, the only licensed treatment—will be available. I hope that the Minister responds positively to that.

It is the view of the alpha-1 patient community that the Government should focus on five key areas. The first is that that highly specialised service should become operational in a timely fashion. Secondly, patients should be involved at all stages in the development and implementation of the service to ensure that the patient voice is fully heard and taken into consideration. Thirdly, we are calling for a review of the impact of the NICE highly specialised technologies guidelines on patient access to rare disease treatments.

Fourthly, we are looking to apply a broader decision framework to the NICE process of evaluating the value of rare disease treatments, looking particularly at the social and societal benefits that impact patients and carers. Finally, we ask the Government to consider the appropriateness of introducing a more formalised process of conditional approval of rare disease treatments in England, such as alpha-1 augmentation therapy, as is being implemented in Scotland.

I shall conclude by referring to an email I received from a patient only yesterday that sets out her concerns with alpha-1 and its misdiagnosis. The sufferer emailed me to say that her mother died from antitrypsin deficiency, and that she now has the lung version of the disease. She is 48-years-old, and two years ago was a runner, but can now barely run for a bus or climb stairs. Her lung function has dropped dramatically in just one year. She is an ex-smoker and acknowledges the harm that smoking caused with respect to the condition. Had she been diagnosed earlier, she would have been able to make better lifestyle choices. The bit that got me was when she said that the deficiency for those who are symptomatic progresses at a very fast rate, and that, for many, it will end in gasping for breath for a long, drawn-out period, until such time as their lungs stop functioning completely. She says it feels like being eaten alive.

If the Government can work towards the two principal objectives and five key recommendations of the alpha-1 patient community, there will be a huge benefit to a significant group of people. It is our hope that the present and future needs of patients suffering this rare condition may finally be met.

Smart Meters Bill (Second sitting)

Debate between Matt Western and Mark Pawsey

Committee Debate: 2nd Sitting: House of Commons
Tuesday 21st November 2017 Public Bill Committees

[Mark Pawsey]

Q Are the Government just being prudent by including this clause in the document?

Derek Lickorish: I think it is a very prudent situation. There must be an anxiety, otherwise why have they done it?

Richard Wiles: Likewise, I am not able to answer as to the exact reasons, but bringing previous Acts together under one is a sound idea. With regards to how DCC would reach that situation, again, I have no absolute definition as to how that could happen now.

[Matt Western (Warwick and Leamington) (Lab)]

Q This is not my specialist subject, but I am interested in the asset provider side. I am trying to get my head around this. Could you give me an idea of how many manufacturers are supplying to the industry?

Richard Wiles: There are different manufacturers for SMETS 1 and SMETS 2.

Smart Meters Bill

Debate between Matt Western and Mark Pawsey

2nd reading: House of Commons & Money resolution: House of Commons & Programme motion: House of Commons & Ways and Means resolution: House of Commons
Tuesday 24th October 2017 Commons Chamber

[Mark Pawsey (Rugby) (Con)]

I welcome the Secretary of State’s speech introducing this Bill. He set out very clearly the benefits of the smart meter programme and what the Bill’s two main provisions will do. First, the Bill will extend the Secretary of State’s powers by five years, from 2018 to 2023. It is interesting that the legislation gives such powers in five-year batches to ensure that the powers are not unlimited. There would be plenty of objections from the Opposition if there were unlimited powers in the Bill, which takes us to 2023. It is entirely appropriate that it should be brought before us, because the very ambitious pace originally set has not been achieved, and the programme is running rather more slowly than we anticipated.

We also heard, secondly, about the introduction of the special administration regime for the body—the data communications company—managing the communication between the smart meters and the energy companies, as well as about the need for resources and facilities to provide protection and rescue given the rare possibility of financial failure. I was very pleased to hear the hon. Member for Salford and Eccles (Rebecca Long Bailey) say that the Opposition will support the Bill and that they welcome and value its measures.

I want to touch on the status of the data communications company, because the programme is running behind schedule and the company is involved in handling rather bigger sums than previously expected. The costs are now expected to run to £900 million, and the project has become more complex than originally anticipated. The energy companies are under pressure from the regulator to increase the rate of installation, which has led to more of the SMETS 1 meters—the first generation meters—being installed. It would be helpful if the Minister clarified when he sums up what will happen when we move to SMETS 2 meters. There is some concern that SMETS 1 meters may need to be replaced. I think the Secretary of State said that there would be an upgrade, but will the Minister talk the House through that process. I will come back to that concern later.

The cost of proofing the technology against cyber-attack has increased. This place has been affected by such an attack, so we all understand the importance of that. We will need to look at the DCC’s cost and revenue. The provisions relating to protection and rescue are very important. Will the Minister comment on the likelihood that those provisions will be needed?

This debate gives us all the opportunity to talk about the aims and objectives of installing smart meters. I am pleased that we have now upped the rate, with 370,000 now being installed per month. The principle of smart meters is fantastic and brilliant: the information about usage is sent to suppliers by the network that is being created. There are real benefits for the utility company. It already knows rates of usage, but this will tell it specifically where the demand is coming from, how much demand there is and at what times of day. All that will enable utility providers to predict demand better, which will in turn give us all the benefit of security of supply.

There are also real benefits for the consumer. By being informed about their energy usage, the consumer can decide to use energy when it is cheaper. They will have a greater awareness of their usage, and they will be able to manage their bills better and reduce their consumption. I am struck by the analogy with the computers we all find in our cars these days.

Our car’s mileage per gallon will vary according to the speed at which we drive on the motorway and how we drive—how much of a hurry we are in. It is possible to modify the mpg. I always find it interesting to note how I might be able to get an extra mile per gallon by modifying my behaviour. I see a real parallel between that and the usefulness of smart meters.

The other principal advantage I see is that of accurate billing. Many people pay for gas and electricity on the basis of what they estimate they may need, so in many instances they pay for more than they use. That is great, because it sometimes allows them to build up a credit and they do not have a debt to the energy provider, but as one person put it to me, that is not great for the family cash flow; so paying their bills on the basis of the amount of energy used rather than an estimate provides a real benefit.

The fourth advantage, which we have not yet seen but is a matter of concern, is that with smart meters, switching between suppliers ought to be easier because anyone looking to switch would have much more accurate data on which to compare suppliers’ tariffs. That should enable them to make a more informed decision. The technology within the meter should enable the switch to be made more easily. There is a real link here—the Secretary of State referred to it—between that ability and the need for some control and management of prices.

[Matt Western (Warwick and Leamington) (Lab)]

I have not done this before. There is a huge amount of sense in everything that the hon. Gentleman is describing, but I was surprised to hear—and maybe he would be—that more deprived households have not been prioritised for the introduction of smart meters. Given what the hon. Gentleman has been saying, it would be a real advantage to their household economy if they were prioritised. Would he welcome that?

[Mark Pawsey]

I thank my constituency neighbour for his remarks. Of course, the issue is the use of the second generation of meters—the SMETS 2 meters—and we need to get them into as many places with prepayment plans as possible, so that those households too can get the benefits of seeing when their electricity is cheapest and using their appliances when they get maximum advantage.