Orkambi and Cystic Fibrosis

Luke Hall Excerpts

Monday 19th March 2018 Westminster Hall

[Luke Hall (Thornbury and Yate) (Con)]

I am delighted to have a chance to speak in this debate, Sir Roger. I thank my hon. Friend the Member for Sutton and Cheam (Paul Scully) for securing it. When it was initially scheduled by the Petitions Committee, they probably had no idea about how timely it would be three days after the announcement that a deal has not been reached. I thank my hon. Friend for his work. I know he has worked with the CF Trust to learn more about cystic fibrosis. I also thank the CF Trust for all the work it has done not only in setting up the roundtable and for spending time with me speaking about CF, but for what it has done to educate all Members.

[Paul Scully]

Because of the nature of the disease and the fact that there are only 70,000 sufferers around the world, the CF Trust has 99% of the entire clinical diagnostic information of sufferers around the world, which is a good resource to be able to feed back into future treatments. Will my hon. Friend pay tribute to that?

[Luke Hall]

Absolutely—that example highlights the positive work that the Cystic Fibrosis Trust is doing. I want to put on record my thanks and appreciation to all the parents and campaigners, whom I find completely inspirational. Not only are they parents, which is challenging enough in itself sometimes, but they are parents of children with CF, and on top of that they manage to find time to lobby their MPs, to get groups of people together, and to get support for petitions and debates such as today’s.

[James Heappey (Wells) (Con)]

My hon. Friend speaks eloquently about the many parents and children who have been campaigning for this cause. I add to them the voice of Helen Mann, my constituent, who has written the most wonderful, compelling book about her daughter’s life with cystic fibrosis and, indeed, her treatment with Orkambi. Her daughter, Clara, came to knock on my door yesterday lunchtime to make sure that I came to today’s debate. It was amazing to see her stood on my doorstep so full of life—a living example of just what an amazing drug it is, and how many others could benefit if only it were available to all.

[Luke Hall]

I pay tribute to all the young people such as Clara who are getting involved and making a difference in the campaign to ensure that Orkambi is available.

I was probably as disappointed as every Member in the Chamber to read the statements that came out on Friday about how a deal on the February offer by Vertex had not been reached. The petition for today’s debate was signed by 470 people from my constituency. I am here speaking on their behalf, and on behalf of Annabelle Brennan, and her parents Elizabeth and Shane. Annabelle is three years old, and is a lovely young girl. I met her at a CF campaigning event in my constituency. She does things that other three-year-olds do, of course, but she also has to endure a complex daily routine of physiotherapy, nebulisers, medication and antibiotics to help her to manage and live with the illness.

I received an email from Annabelle’s nursery leader, who is also my son’s nursery leader, explaining that Annabelle’s time at nursery, and her interaction with the other children in the group, is affected by her condition, because she is under constant supervision and is not always able to be involved in all the activities like the other children. Every winter, there is an added risk of further infection due to the common cold, and, as time passes, the potential for more complications increases. I remember hearing a devastating description from Annabelle’s parents of how every day is like waking up on a cliff edge, not knowing when irreparable damage caused by CF will come. That highlights the importance not only of these debates and the pressure, but of getting a deal, so that Orkambi can be made available as quickly as possible. That would ensure that children such as Annabelle, and people living with CF throughout the country, can realise their full potential.

A number of colleagues have laid out evidence today that shows that Orkambi works. We heard about Carly’s story from the hon. Member for Dudley North (Ian Austin)—I thank him for all he has done. We have seen international examples of the difference that Orkambi has made, but the reality is that progress on reaching a deal has been devastatingly slow. We know that Orkambi can help about 50% of people with CF. The other point we should remember is that precision medicines such as Orkambi are not just the better option—for some people, they are the only option. People have stated the countries around the world where it is already available: Austria, Germany, France, Ireland, Italy, the USA, Luxembourg, the Netherlands, Greece, Denmark, and many more. Despite the prevalence of CF in the UK, it is still not available here.

The set of statements released on Friday was disappointing, but although an agreement has not been reached, that must not be the end of those discussions; they should continue, ensuring that a deal is reached as soon as possible. It is also important that NHS England ensures that any deal is sustainable in the long term, and flexible enough to enable us to take into account any future advances in CF medication, either by Vertex or another company. The aim of NHS England and the National Institute for Health and Care Excellence should be to negotiate the best possible long-term access for people living with CF. That has to be reflected in the deal.

I ask the Minister to convey to both Vertex and NICE the importance of ensuring that a deal is reached as quickly as possible, and I encourage him to take a seat round the table himself, so that Annabelle and other people around the country have access to these drugs. I also ask him to update us on what conversations his Department has had with NHS England and Vertex since the announcement on Friday to see where progress is likely to be made in the coming weeks and months. I finish by saying to the Minister, NHS England and Vertex, “Can we please ensure that a deal is reached as quickly as possible, because this drug has the potential to change thousands and thousands of lives?”

Oral Answers to Questions

Luke Hall Excerpts

Tuesday 6th February 2018 Commons Chamber

[Luke Hall (Thornbury and Yate) (Con)]

3. What steps he is taking to integrate local health and social care services.

[The Minister of State, Department of Health and Social Care (Caroline Dinenage)]

The fact that the Department has been renamed the Department of Health and Social Care reflects both their interdependence and our commitment to achieve co-ordinated care tailored to individual needs. The better care fund is a national integration programme that helps the NHS and local government to deliver better, more joined-up services.

[Luke Hall]

I thank the Minister for that answer and welcome her to her place. The proposal to build a community health centre in Thornbury and Frenchay is an essential part of joining up health and social care in South Gloucestershire. Will the Minister join me in highlighting the importance of Thornbury health centre and in pressing South Gloucestershire clinical commissioning group to make progress with the project as quickly as possible, after years of unnecessary delays?

[Caroline Dinenage]

I thank my hon. Friend for raising that important issue. He is right to do so, and proposals such as those for Thornbury health centre are crucial for ensuring that health and social care are truly integrated and centred around each individual in the community. I am advised that South Gloucestershire CCG remains committed to progressing those plans as soon as possible and that the local NHS expects to be able to provide an update on plans next month.

Oral Answers to Questions

Luke Hall Excerpts

Tuesday 11th October 2016 Commons Chamber

[Mr Speaker]

And have a cup of tea with the fella.

[Luke Hall (Thornbury and Yate) (Con)]

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health (Mr Jeremy Hunt)]

Last week, I announced plans to make the NHS self-sufficient in the supply of newly qualified doctors by the end of the next Parliament. We recognise the brilliant work that is done by the many outstanding overseas doctors who work in the NHS and have made it clear that, whether or not they are from the EU, we wish that work to continue post-Brexit. However, as the fifth largest economy in the world, Britain should be training all the doctors it needs. While there will always be beneficial exchanges of doctors and researchers between countries, we have a global obligation to train enough doctors for our own needs, otherwise the inevitable consequence will be to denude poorer countries of doctors whose skills are desperately needed.

[Luke Hall]

Thornbury health centre is crying out for redevelopment to cater for the growing local population. Will my right hon. Friend meet me, representatives of the health centre and NHS Property Services to see how we can take a co-ordinated approach that will move the health centre forward?

[Mr Hunt]

I can do better than that, because I have said that I am prepared to go to the health centre. I remember a very good visit to Thornbury community hospital during the general election campaign. I understand what those at the health centre are trying to do and they are absolutely right to be thinking about how they can improve out-of-hospital services.

Health Provision (South Gloucestershire)

Luke Hall Excerpts

Tuesday 14th July 2015 Westminster Hall

[Luke Hall (Thornbury and Yate) (Con)]

I thank my hon. Friend the Member for Filton and Bradley Stoke (Jack Lopresti) for calling the debate—I know how hard he has worked to keep the issue at such high prominence—and my hon. Friend the Member for Kingswood (Chris Skidmore) for his comments on healthcare in the region.

As a local man, born in Southmead hospital just next door, I have, like other hon. Members here, relied on the NHS in South Gloucestershire and Bristol all my life. I echo their thoughts, especially those of my hon. Friend the Member for Filton and Bradley Stoke, on Frenchay and the delays in the CCG. I followed the reforms to healthcare in the previous Parliament and broadly support the CCG approach, which is fundamentally a good one. I welcome the announcement that the CCG has recently signed a 10-year contract with Sirona Care & Health to continue providing services at Yate minor injuries unit—a fantastic resource for local people in my constituency. That has been a great relief to a large number of people across Thornbury and Yate.

According to provisional Government figures, South Gloucestershire is scheduled to receive an extra £1.5 million next year, which is extremely welcome and only possible because of the Government’s management of the economy. As my hon. Friend the Member for Kingswood mentioned, the difference between funding per household in South Gloucestershire and Bristol is stark. Spending will rise to £1,856 per house in South Gloucestershire, but it is more than £2,100 per house Bristol—£273 more in Bristol than South Gloucestershire. I appreciate the raise we are receiving, but it is clear that we are inadequately represented in our funding.

I am particularly keen that the Government continue to address the problems associated with an ageing population in South Gloucestershire. The CCG has identified the problems of ageing, particularly diseases such as dementia, to be a significant priority for the area. I will support those efforts where I can by holding Dementia Friends events around my constituency to raise awareness of the disease in our communities.

The healthcare provision offered at Thornbury hospital is extremely important to my constituents. The previous proposals for Thornbury involved redevelopment of combined health centre and hospital sites, to lead to NHS rehabilitation beds to replace the Henderson ward as part of improved rehabilitation, re-ablement and recovery services for South Gloucestershire; a replacement healthcare centre with space for additional ambulatory services; and new extra-care housing and nursing home capacity, which is extremely important when we consider the 28,000 homes planned over the next 11 years in South Gloucestershire. I assure the Minister and my constituents that I will work with all the relevant bodies, including the CCG, NHS England and South Gloucestershire Council, to ensure that the services are delivered to Thornbury. That emphasis will ensure that my constituents receive the care that they need to remain active members of our local community.

More broadly, I should like to mirror the comments made recently by the Prime Minister and the Secretary of State for Health regarding the aspiration for a seven-day NHS. Yate minor injuries unit, which treats relatively minor injuries such as broken bones, minor head injuries or minor eye problems, is only open until 1.30 pm on a weekend. If we are to relieve the pressure on primary care centres, we must work to ensure that our community services can perform their duties any day of the week. I know that the Minister shares that aspiration and is working hard towards it.

In summary, I am pleased to welcome the move by the CCG to continue to provide crucial services at Yate minor injuries unit. I hope that people will join me in working to provide services and increased provision at Thornbury hospital as quickly as possible.