Orkambi and Cystic Fibrosis

Marion Fellows Excerpts

Monday 19th March 2018 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

It is a pleasure to serve under your chairmanship, Sir Roger.

Where do I start to sum up this debate? It has been a truly awesome experience, and I congratulate and thank all the Members who took the time to attend. I have rewritten my speech all the way through the debate, which I will try to summarise as best I can.

The petition was signed by 371 of my constituents. As has been said, the general public care about this. I thank the Butterfly Trust, which is the CF charity in Scotland, the Cystic Fibrosis Trust and the CF support group for parents in Scotland for all the assistance they gave me to prepare for the debate. We heard many passionate and informed speeches. There is true cross-party agreement. We heard how CF sufferers could benefit from Orkambi and how it could transform their lives.

I must declare a personal interest. My 16-month-old granddaughter Saoirse was diagnosed with cystic fibrosis shortly after she was born. On hearing about the debate, my daughter-in-law enlisted all of her friends and family to sign the petition, even though she knows that Orkambi will not help her daughter. Vertex is developing new treatments all the time, and the use of Orkambi can only help that research.

Saoirse is lucky—she is pancreatic sufficient, which means she can digest food—but she is on daily antibiotics and additional treatments. As a grandmother, watching her going through physiotherapy is heartbreaking. Her parents were told that they must not comfort her as she needs to get used to it, because she will need physio for all of her life. She cried, and I cried. Her grandfather, who is here today, cried, too. However, she is getting used to it. CF sufferers and their families are amazing people—I discount myself from that. They care about each other. The proof of that is here today, in more than 100,000 signatures and so many Members taking part in the debate.

I pay special regard to the hon. Member for Dudley North (Ian Austin). I apologise that I could not attend his roundtable—I have serious family illness at the moment. The fact that so many Members attended shows how important this is to both Members and their constituents. We do things not just because we want to, but to help our constituents. He talked a lot about the cost of Orkambi and how we should look better at cost-benefit analysis. We should also look at the contribution that CF suffers could make, were they able to. We must all deeply reflect on that. As he said, when an everyday drug is denied to CF suffers, that is another day when their lung power is damaged. We cannot allow that to continue.

As one of my colleagues stated, the Scottish Government are working hard to improve access to drugs such as Orkambi through changes to the individual patient treatment request to ensure that patients in Scotland get access to the right treatment at the right time. Orkambi could be accessed through that, but the Scottish Government’s role is to try to ensure that everyone in Scotland gets equal treatment, which is important all over the UK. There should be no postcode lottery for treatment.

[Mr Sweeney]

Does the hon. Lady agree that the Scottish Government and the UK Government should consider an interim acceptance period for drugs under active price negotiation when organisations such as the Scottish Medicine Consortium have agreed that there is a clinical benefit? That would be a good way to ensure that people get immediate access. Two years is two years too late for many people.

[Marion Fellows]

I agree with the hon. Gentleman. We are talking about people whose lives are shortened and people whose lives are deeply affected. These people could be of such benefit to society as a whole. It is difficult for me to think beyond my granddaughter, and it is also difficult to listen to stories of what might happen. I know she is lucky, but I also know and am passionately concerned about other children who are even more affected by CF than she is. We owe it to them and to people who will inherit CF in future.

I have to be a carrier of the CF gene, and my husband must also be a carrier. We were so lucky that none of our children were affected. It is a terrible, silent disease. The fact that CF sufferers cannot even get together for comfort and mutual support—it all has to be done through parents’ groups—is even more heartbreaking.

[Bob Stewart]

I am deeply affected by listening to the story of the hon. Lady’s granddaughter. When did the hon. Lady and her husband know that they were carriers? That is pretty important.

[Marion Fellows]

I probably am a carrier—unfortunately, for another reason, we have not been tested yet. That is another issue that we will deal with. It would help future research. Actually, after my daughter was tested, she said to me, “Mum, you and dad must go out and buy a lottery ticket—you must be the luckiest people around,” because I have three children and none of us has CF.

The Scottish Government are encouraging patient representatives to participate in Scottish Medicine Consortium meetings. That must be a good driver to let clinicians and other medical people see with their own eyes the difficulties undergone by people who cannot access these drugs.

Sir Roger, you have been most considerate, and I will now sum up. There is an overarching need for a change in the way in which new drugs are approved for use. Cost-benefit analysis needs to be used to calculate the true costs. For example, we should look at reductions in hospital care costs and include the benefits to the economy from the use of these drugs—especially Orkambi, which is our exemplar for now. Of course, CF suffers must be able to play a full part in society and, as we have heard, they could do so if they could access drugs.

Orkambi could be just the start of a whole line of drugs that will benefit CF suffers. No one can cure the disease at the moment, but such drugs will lead to so many more better and productive lives. Yes, there are issues around pricing new drugs. Pharmaceutical companies are not there for charitable purposes, and we all know and understand how expensive it is to create new drugs, but there must be a better way of pricing the cost of new drugs at their introduction across years of their use rather than huge up-front costs.

I was asked by the Scotland parents support group to demand that the Minister takes responsibility for the negotiations with Vertex, and that he brings NHS England and Vertex Pharmaceuticals to the table. Deals and negotiations should never be conducted by email. I am happy to do so, and I wait with interest for his response.

Autism Diagnosis

Marion Fellows Excerpts

Wednesday 13th September 2017 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Howarth. I will rattle through this to give others a better chance to speak. I should mention that I have been on Twitter, talking to someone in Scotland who is watching the debate with great interest because she has four children with autism. I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on obtaining the debate and congratulate everyone who has spoken so well and passionately during it.

In 2011, the Scottish National party Scottish Government launched a national strategy for autism, and they updated it in 2015. Some of the work done has included working with the Autism Achieve Alliance to produce action research that provides evidence to address waiting times for diagnosis. Things are not perfect in Scotland, but we have some advantages in being a smaller country. There are also plans to provide leadership for an improvement programme across NHS Scotland to improve diagnostic capacity, which we all agree is vital.

Scottish Autism worked in partnership with the Government to develop a web-based autism toolbox to improve accessibility to resource in schools across Scotland. Crucially, it also piloted one-stop shops for autism across Scotland. That is where I got involved. There was one in my constituency and, when the pilot programme ended, the local authority did not continue the work, so many families in my constituency were left bereft, with a much less comprehensive programme and much less support for families and people with autism.

I should pay tribute to the Minister for Childcare and Early Years in Scotland. He has a son with autism. He has done a lot of work, which has led to a number of things, such as Aberdeenshire Council’s national recognition for autism friendliness. He has piloted film and theatre programmes and shopping nights in shopping malls especially for people with autism, all of which help to improve the quality of life of those affected and their families.

In Scotland, as I have said, we have seen excellent work. We really want to make all people with autism live as independent lives as possible. As has been said repeatedly, diagnosis is vital for that. It gives such comfort to people with autism to know what is “wrong” with them. Once they know that, that allows them to see life in a different way, through their own eyes. I saw that when I taught in further education colleges.

The See Me initiative in Scotland has been important in showing people to look at people, not at conditions. I commend the Scottish Government for that initiative, on which they spend £1 million a year. That programme, which helps people to look at others and understand that they have issues—it is not that there is anything wrong but that they have difficulties in normal life—is mainly linked to mental health issues, but it helps people with autism as well.

There is still much work to be done, and the Scottish Government are trying to move towards better joined-up mental health. I know, and it has been said already in the debate, that autism is not a mental health issue, but it can foster mental health issues, so we need to look at how services in Scotland are joined up, and the transition from child to adult mental health issues.

Finally, I congratulate everyone who spoke so well and passionately in the debate. I would never have known anything about this subject had I not been forced to listen to constituents who lost their one-stop shop and the support that they so heavily depended on. They have other support, but they tell me that it is not nearly as good.

Preventing Avoidable Sight Loss

Marion Fellows Excerpts

Tuesday 28th March 2017 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

Thank you, Mrs Gillan; it is a great pleasure to serve under your chairmanship. I commend the hon. Member for Wealden (Nusrat Ghani) for working so hard to secure this Backbench Business debate.

I must start by declaring a personal interest in this debate: I have been diagnosed with cataracts and also have an issue with the macula in my left eye. I would like to thank the Doorkeepers, who are always present, for writing down the names of all Members for me so that I can refer to them properly in my speech. I simply could not do it without them.

Like a lot of people, no matter how hard I listen at hospital appointments, I cannot always absorb everything that is said to me, so I do not know exactly what is wrong, but I am due another appointment soon. I am fortunate that as a result of visiting my local optician for my regular free eye test, the optometrist saw what was wrong and referred me to a local hospital for further investigation, and then on to a hospital in Glasgow. My husband has also benefited from free eye tests and is receiving treatment. We are really grateful to the Scottish Government that we have free eye tests.

The Cabinet Secretary for Health committed last year to a review, to consider an even more joined-up strategy and ensure that practices already taking place in parts of Scotland are spread across the country. The chair of Optometry Scotland has said that the review, which will look at existing models of good practice, could really change what is happening.

As the hon. Member for Wealden said, almost 2 million people are living in the UK with sight loss, and the number is expected to double to 4 million by 2050 because of the ageing population, which many speakers have referred to. I am one of those older people, so I have a dog in this fight. I do not want people across the UK to wait any longer than necessary for proper treatment. The hon. Lady also referred to glaucoma, which is the most prevalent cause of preventable sight loss. As she pointed out, there is no overarching eye strategy for England, but there are strategies in place for Scotland, Wales and Northern Ireland.

Almost 300,000 people are registered with sight loss in England, and that figure will double. The voluntary sector in England is supported on this, but the Department of Health recognises that local solutions are better. Indeed, the hon. Lady made an impassioned plea for that. She referred to small changes to guidelines. A national strategy is vital to plug local gaps. She called for the screening of all children between four and five, which has been recommended but not yet implemented; I had not recognised that previously, but I do not think anyone in this Chamber would not support that.

The hon. Lady said that early diagnosis is really important and must be followed by speedy treatment, and that missed and cancelled appointments should be minimised. Finally, she looked at the international landscape and the good work done by DFID. She also mentioned that the cost of vision loss in the UK is £28 billion per annum, which could be mitigated by changing the type and speed of treatment that people receive. That was echoed by other speakers.

The hon. Member for Great Grimsby (Melanie Onn)—what a wonderful name for a constituency—talked about quality of life, especially for older people. That was echoed by my hon. Friend the Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), who said that the difficulties experienced by older people lead to things such as falls, which impacts on the national health service across the UK, but especially in England. It also leads to isolation and loneliness, of which my hon. Friend has great professional experience and also family experience with her own grandmother. As the hon. Member for Great Grimsby said, patients should not be left waiting. She referred to problems with Northern Lincolnshire and Goole NHS Foundation Trust, which has been sued as a result of delay in treatment.

The hon. Member for Twickenham (Dr Mathias) referred to her career as an ophthalmologist. I must say that ophthalmologists do great work, because it was my local ophthalmologist that started my long referral for treatment. The hon. Lady hopes that the Government will achieve their own 20/20 vision for England; indeed, I think we all hope that. Delays are affecting 20 people a month. It gets to the stage where people turn up for appointments but nothing can then be done. No one should be happy with that situation, and no one is. I make a plea to the Minister to ensure that he looks at it.

The hon. Member for Wealden referred to the case of Jean Rugg and the fact that people are now going private across the UK to try to prevent sight loss. I am sorry, Mrs Gillan: I get a bit emotional about this issue because of my own fear. I have not been wearing glasses from such a young age as the hon. Member for Strangford (Jim Shannon)—I was 11 when I started—but I think I can safely say that I can give him a good few years, so I have been wearing them for a long time. For someone who already has sight problems, the thought of losing their sight is something that they live with daily, and when it is flagged up that there might be something wrong, that causes great personal distress.

A really important point is that free eye tests, which we have in Scotland, encourage people to attend regularly to have their eyesight checked, which, as I said, leads to better treatment earlier. We really do not want a postcode lottery anywhere in the UK but, as hon. Members said, there is a postcode lottery in England: people need to live in the best place to get the best treatment.

The hon. Member for Strangford talked about the role of the optician. He said that 30,000 people in Northern Ireland—1.7% of the population—are affected at present. However, as is the case for the whole United Kingdom, this will be an ongoing and serious issue as populations age. My hon. Friend the Member for East Kilbride, Strathaven and Lesmahagow painted a vivid picture of how people can be affected psychologically by sight loss—loss of vision. It is awful.

I want to ask the Minister about the cost of drugs and the £20 million cap that NICE has implemented in England. Does he consider the new cap an appropriate measure, given the Conservatives’ manifesto promise to speed up the introduction of new medicines into the NHS? It seems counterintuitive, when we can save the NHS money through early treatment, that we stop treatment that will help to prevent people from suffering falls and psychological illnesses and costing the NHS even more in the long run. Prevention is always better than cure. We really should be looking at that. In Scotland we do our best to do that. There is a different ideological focus. I have talked many times in this Chamber about how we do things better in Scotland. Hon. Members across the Chamber do not always agree with me, so it has been comforting, and indeed pride making, to hear them agree with me on this issue. A national strategy is needed in England as well as in the rest of the UK—in the devolved Assemblies and in the Scottish Parliament. Can the Minister give some comfort this morning to my colleagues who represent English constituencies?

It is a privilege to be able to talk here about the good work that we are doing in Scotland and that has been done in other parts of the UK. I again ask the Minister to look at the £20 million cap and at providing for the NHS in England a strategy that can help prevent avoidable sight loss.

Stillbirth

Marion Fellows Excerpts

Thursday 9th June 2016 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

It is very hard to sum up this debate. We have heard some extraordinary contributions from my very brave colleague, my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson), and from the hon. Members for Henley (John Howell) and for Colchester (Will Quince) and my hon. Friends the Members for East Renfrewshire (Kirsten Oswald) and for Livingston (Hannah Bardell). While listening to all those wonderful contributions, I reflected on my own story, which is not of a stillbirth but of a bad miscarriage, which I have never mentioned to my children who are alive now. This debate is so important, because it puts into the public domain the pain, grief and horror of stillbirth. As parliamentarians, we must make this a subject that we are able to discuss so that we can improve the life chances of children yet to be born.

My hon. Friend the Member for North Ayrshire and Arran asked the Minister to take steps to improve the statistics. The hon. Member for Colchester said that we do not want to talk about statistics; we are talking about babies. We want to improve the life chances of babies yet to be born. This is a time that I feel proud to be a Member of Parliament, because we can do that. The Sands month for remembering and mentioning stillbirths is important, as is the work of the other charities that have been mentioned. One charity that has not yet been mentioned is Kicks Count, whose work leads directly to women listening to their bodies and ensures that if there is not foetal movement, they can report that. I hope that as a result of this debate, women will be listened to. I know, since I have been there, that women know their bodies. They know when something is not right. If only we could get health professionals to take on board what women are telling them, that could make a huge difference.

Other changes could be made. As my hon. Friend said, health trusts—CCGs in England—should not be investigating themselves. There should be independent investigations into deaths, and those investigations should be time-limited and not allowed to drag on. That is important. Coroners should be able to hold inquests and post-mortems should be carried out to help our understanding of why babies die just before, during and just after birth. It is important that we take that work forward. I understand that men are also affected by stillbirth. We sometimes concentrate on mothers, but we must recognise that it is families who suffer.

As has already been said, there is nothing but consensus among the parties in this debate, both north and south of the border, and that is very important. We all want the best for babies. We all want them to be born. We all want to improve our standing in global statistics. Actually, we all just want more babies to be born safely, and when they cannot be, for their deaths to be investigated so that the fight to help this really difficult situation moves forward.

World Autism Awareness Week

Marion Fellows Excerpts

Thursday 28th April 2016 Commons Chamber

[Marion Fellows (Motherwell and Wishaw) (SNP)]

Two weeks ago I would not have been able to speak in this debate, but because of a pressing constituency issue I have found myself suddenly having to read up and listen, and I have learned so much today about autism. My only previous experience was teaching some autistic young men who passed through my hands when I was a further education lecturer.

I have become more and more aware of the crying need to raise awareness of autism at all levels—in the general public as well as in public authorities. My hon. Friend the Member for Argyll and Bute (Brendan O'Hara) mentioned the Scottish Government’s plans for autism and their strategy. As part of that strategy, they opened six centres across Scotland to provide a one-stop shop experience for parents and people with autism. The one-stop shop in Motherwell will probably close in June this year. Since that has been announced, I have had innumerable emails from people in my constituency and outwith it, because the shop covers the whole of Lanarkshire. There are two local authorities involved—North Lanarkshire Council and South Lanarkshire Council—which will no longer fund those services. As hon. Members can imagine, that is a devastating blow to my constituents and people across Lanarkshire.

The one-stop shop provides workshops, training for parents and professionals, and support services for those who have autism. Those services are available even before diagnosis: anyone who thinks there may be an issue can go there and get advice. The shop was planning to run further courses for girls with autism, which is a very important area, and it was hoping also to run other specific and technical courses for parents and professionals.

My local authority, North Lanarkshire Council, has indicated that it will continue to fund an organisation called HOPE for Autism, which does good work with families in North Lanarkshire. However, the organisation’s services can be accessed only after diagnosis and its work focuses mainly on socialising and is for children only. There is also an annual fee per child for parents who join.

The reduction in services is devastating news. I do not want to stand in this place and denigrate anything that HOPE for Autism in North Lanarkshire has done and will continue to do, but it does not provide a range of services that parents can access at present. That is causing great distress.

I was unable to attend a meeting at the one-stop shop on Monday, but my office manager went and came back almost in tears at some of the stories that she heard. She said she found it most moving when parents said that they almost wished that their children had a visible disability, or they wished their children had something else, because then they would get more help and more hope and people would understand what was happening with their children. That heartfelt wish brought home to my office manager how little she knew about autism.

I do not think for one moment that North Lanarkshire Council’s motives are bad. I know that there are funding difficulties all over the UK, but I do not think the council understands what the one-stop shop provided. I have a list of some of the wonderful work that it has done. It ran workshops on visual issues and autism, workshops on sleep strategies by Sleep Scotland, workshops on support for young carers, on autism and diet by NHS Lanarkshire, and on autism and play by a Scottish Autism support team, a workshop on demand avoidant behaviour by the paediatric autism consultancy team, and a safe talk autism awareness training workshop by the Richmond Fellowship. All that will be lost in my area.

[Mrs Gillan]

I hope I am buying the hon. Lady an extra minute. What she is saying is very important. Does she think there is any possibility of that decision being reversed, as she is making such a powerful case for keeping the one-stop shop open for her constituents and people beyond her constituency?

[Marion Fellows]

I thank the right hon. Lady for her intervention and the time it may buy me. As she can imagine, the parents are fighting hard to retain the shop and to convince both North and South Lanarkshire Councils that the service must be funded, because of the great work that it does and the benefit that it brings to anyone in North or South Lanarkshire who is affected by autism. Some of the emails that I have had are heart-wrenching, telling of social isolation and nine-year-old children trying to kill themselves. Those emails are full of praise for the help that has been received, the work that has been done and the staff in the one-stop shop, two of whom are seconded from Scottish Autism and two of whom will lose their jobs. I will go on and fight for that very valuable shop in Motherwell.

National Minimum Wage: Care Sector

Marion Fellows Excerpts

Wednesday 23rd March 2016 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

I thank the hon. Member for Sheffield Central (Paul Blomfield) for securing this really important debate.

I looked around the room a moment or two ago and I think I qualify as the oldest person here, so this debate has a particular resonance for me. I am over 60—I will be 67 on 5 May—and I have a vested interest, so I should declare it right away. I am also very glad that, if I do require care at home, I will probably have care at home in Scotland. I do not say that everything in Scotland is perfect or that things could not happen there as well, but in the debate on securing the national minimum wage for the women—it is mainly women—who care at all sorts of levels and for paid home care workers, we are going too cheap for them; we should be looking for the living wage of £8.20 an hour. That requires political will, which I find sadly lacking in this Government. The Scottish Government have that will; they have a Cabinet Secretary for Fair Work, Skills and Training.

We need to pay the people who look after the most vulnerable people in our society a decent wage. If we pay a fair wage, we get fair work. I was a local councillor and I am conscious of the fact that a lot of women were very much underpaid and strived for years to get equal pay with male counterparts. It is still happening in Scotland. As I said, we are not a utopian society, but the Scottish Government have committed to paying the living wage and to giving enough money to local authorities to pay the living wage to people who take part in the health and care partnership. I cannot understand why that cannot be done here in England as well. It requires political will, which is sadly lacking.

Also required is the political will of the Government to hound, harass and do whatever they can via HMRC or any other agency to ensure that employers pay the minimum that is required in this country, and they should be encouraged to pay far more. I do not want to be in a position where—I will personalise it—someone is being paid to care for me and they cut short the time that I require and am entitled to, to rush off and help someone else. It is a sad reflection on society that we treat the most vulnerable in an almost callous way. We should look at it from the other point of view: would you want your parent, mother, sister or brother to be subjected to work from someone who is grossly undervalued and underpaid?

We need to change the entire context of care for the elderly and disabled across the United Kingdom. If we do not, we are building up a time bomb for ourselves and for those we care for most.

Cancer Drugs

Marion Fellows Excerpts

Tuesday 19th January 2016 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

It is a privilege to serve under your chairmanship, Mr Streeter. I thank the hon. Member for Mid Derbyshire (Pauline Latham) for securing this important debate. I will give the debate a more Scottish context.

For patients with a life-threatening or highly symptomatic illness, getting access to the best treatment is crucial. Living with a condition that has no cure or treatment is difficult, but knowing that you or your loved one is denied access to an available treatment is intolerable. Our biggest problem is accessing new drugs, which are often very expensive and above the limit set for NHS access by the National Institute for Health and Care Excellence—NICE—or its Scottish equivalent, the Scottish Medicines Consortium, the SMC. That results in delayed access to new treatments and, as has been mentioned, it appears to contribute to the UK’s poor cancer outcomes by comparison with other countries. The issue is even worse for those with rare diseases, because the commercial imperative to develop a drug in the first place is weaker, due to low patient numbers.

There is also frustration for clinical researchers who enter patients into trials that lead to a drug’s development in the first place. The UK, and particularly Scotland, punch above their weight in the active recruitment of patients into drug trials for diseases such as cancer. Patients may benefit from gaining access to the new treatment during the trial but, once the trial has been successfully completed, new patients do not get that opportunity, which is demoralising and could undermine research efforts in the future. Some of the drugs that have been researched over the years are now being removed from the list in England.

Once a new drug has gained a licence, NICE and the SMC carry out their assessments. In Scotland, however, the SMC utilises the evidence gathered to carry out just a brief review, with the emphasis being more on the drug’s effectiveness. Cost comes after that.

There are three major differences in the access systems north and south of the border. While both have drug access funds, in England the fund is only for cancer whereas in Scotland it is for any new drugs and rare diseases.

The Cancer Drugs Fund in England, which was meant to be temporary, has enabled patients to access new cancer drugs that would otherwise have been unobtainable. It has now been running for five years and some drugs are being excluded on cost grounds. In Scotland, after a review in 2014, the SMC established the patient and clinician evaluation, which allows reconsideration of a drug while taking into account the wider experience of it and capturing input from patients and clinicians. That gives patients a voice.

[Sir Oliver Heald]

Abraxane fails the test of three months’ effectiveness, but it is useful in producing two. Why is it that the Scottish system allows Abraxane? Will the hon. Lady give us a bit more of an understanding of that? I would like to see the drug back on the list, and if the Scottish system is a way of doing that, it might be worth looking at.

[Marion Fellows]

I thank the hon. and learned Gentleman for his intervention. He has asked me something that I cannot answer definitively at the moment, because I am not a clinician. I am, however, more than happy to come back to him on that. I know that PACE—the patient and clinician engagement group—has done some development on it, but I would like to give the hon. and learned Gentleman a fuller answer and I can do that later, if he agrees.

[Sir Oliver Heald]

indicated assent.

[Marion Fellows]

Where cost is a factor in prescribing drugs it is important that we consider ways of lowering it. The pharmaceutical price regulation scheme could be used. When a drug’s spending threshold is reached, a rebate is paid. In England, it goes back to the Treasury but in Scotland it goes on to further new drugs.

The delisting of cancer drugs because of cost causes untold heartbreak to patients and families—the very people we all represent—and the time has come to find a way of making new drugs accessible to, and affordable for, the NHS by considering arrangements such as multi-year budgeting, which would allow for a lower initial price. Pharmaceutical companies would hopefully be open to that in exchange for getting their drug into use at an earlier stage.

It is important to understand that drug companies fund drug development research for years before they even know if the drug is worth licensing. Many potential drugs fall by the wayside and, as the public purse would never be able to fund such a level of risk, it is necessary that pharmaceutical firms see a return on their investment, to secure ongoing research. That goes back to why some drugs are delisted because of their cost. However, there must also be recognition of the support provided by universities in Northern Ireland and Scotland, and in England, which get Government funding to help towards researching new drugs.

Off-patent drugs can also be used in cancer treatments, usually through repurposing. It is important that we consider that, as it could also lead to a cost—[Interruption.] I am sorry, I will just wind-up my speech. Some of the barriers to treatment can, however, be broken down through negotiation between all interested parties. The aim would be a system that worked equitably for all stakeholders, from patients, doctors and the NHS to Governments and the pharmaceutical industry.

[Mr Gary Streeter (in the Chair)]

As a Front Bencher, the hon. Lady has 10 minutes if she wants them, so she should need not rush her important peroration.

[Marion Fellows]

It is fine. Thank you, Mr Streeter. I managed to get through my speech, with a rush at the end.

[Mr Gary Streeter (in the Chair)]

Thank you very much. I call Andrew Gwynne.

Cancer Drugs

Marion Fellows Excerpts

Tuesday 20th October 2015 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

Thank you, Mr Hollobone; after the build-up I have had, I hope not to disappoint. However, my hon. Friend the Member for Central Ayrshire (Dr Whitford) I am not, so you will forgive me if I disappoint somewhat. I apologise in advance that I will not be able to stay for the summing-up, as I have urgent constituency business connected to Tata Steel.

Cancer is an enemy we all have to fight. The hon. Member for Strangford (Jim Shannon) said that earlier. He is absolutely right, and I thank him for securing the debate. Many right hon. and hon. Members have already mentioned that cost is often a factor in decisions regarding specialist cancer drugs, and it is a factor that cannot be overlooked.

Scotland does things slightly differently. Its £80 million new medicines fund is proportionately much larger than the UK’s cancer drugs fund of £340 million. The Scottish Medicines Consortium—the SMC—which was reformed last year, gives advice to NHS boards in Scotland and is in charge of the fund. The SMC takes patient and clinician evidence as part of its assessment for drugs, which has led to many more of them being passed for use. The SMC also covers orphan drugs, for one-off conditions. In January of this year, the first case of Translarna for use in muscular dystrophy was agreed in Scotland, because of the SMC’s work.

Returning to cost, the UK’s pharmaceutical price regulation scheme limits the amount of money paid by the NHS to pharmaceutical companies and thereafter a rebate comes back to the service. In Scotland, the rebates are put back into the fund, but I understand that in the rest of the UK the money goes to the Treasury. In that way, Scotland sometimes gets the fund to grow even more. The cancer drugs fund can lead to health inequality, simply because better educated, middle-class patients and their families are better able to argue their case. That is not right, and something should be done on it.

A number of right hon. and hon. Members, including the hon. Member for Foyle (Mark Durkan)—I apologise in advance for not referring to all Members by their constituency—have said that funding is important. The price challenge from cancer drugs is acute, and we all need to find a better way of funding drugs, to help everyone. For example, Herceptin took 20 years to get to patients, and a lot of drugs frequently do not make it through. It is understandable that the cost of drugs reflects that of research and development, which can take a long time and cost large sums, but surely it cannot be impossible to bring about a costing system that benefits everyone. A combined purchasing council, as mentioned by the hon. Member for Foyle, is something that the Government should look into.

I am extremely sorry that I cannot bring any more new information to the debate, but the fact that the Scottish Government place so much emphasis on the matter, and spend such a large proportion of their health budget on it, is indicative of how much we need and want to help cancer sufferers and those with unusual conditions. I hope that my small input has helped to stimulate the debate. Mr Hollobone, I am afraid that I now have to leave the Chamber because I have had an urgent call to go elsewhere. I apologise.