PACE Trial: People with ME

Alison Thewliss Excerpts

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan]

Many parents who try to home school their children also face local authority intervention, trying to get the children back to school. We must listen to patients.

This disease is very easy to ignore. All too often, those living with ME are housebound, and suffer from what they refer to as “brain fog”, which makes it difficult to mount an organised campaign. That means that much about ME remains unknown. There is some evidence that it could be grouped with auto-immune conditions such as multiple sclerosis and rheumatoid arthritis. Some people have reported that certain anti-viral drugs improve their condition, but without properly conducted scientific research, we do not have the answers. Ultimately, the impact of the PACE trial on those with ME has been devastating.

[Alison Thewliss (Glasgow Central) (SNP)]

rose—

[Luke Graham (Ochil and South Perthshire) (Con)]

rose—

[Carol Monaghan]

I give way to my hon. Friend.

[Alison Thewliss]

My hon. Friend makes a good case. My constituent Carol Ann McGregor has had ME since 1996 and has been bedbound for seven years. She says that she has

“lost my life, health, husband, my career and my home”.

Does my hon. Friend agree with my long-term family friend Maureen Bivard that the cover-up, and the way in which the PACE trial was carried out, amounts to a miscarriage of justice for patients?

[Carol Monaghan]

I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

Oral Answers to Questions

Alison Thewliss Excerpts

Tuesday 6th February 2018 Commons Chamber

[Jackie Doyle-Price]

The hon. Lady will know that action against sugar is very much part of the childhood obesity plan that the Under-Secretary of State for Health, my hon. Friend the Member for Winchester (Steve Brine), is taking forward, but there is a lot more we can do to address the concerns about caffeine, which I know is high on his “to do” list. We will no doubt have more exchanges on this subject in due course.

[Alison Thewliss (Glasgow Central) (SNP)]

7. What progress his Department has made on implementing the maternity transformation programme.

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

Our ambition was to halve the number of maternal deaths, neonatal deaths, neonatal injuries and stillbirths by 2030, but because of the progress we have made with our maternity safety programme, we have brought that forward to 2025.

[Alison Thewliss]

I am glad to hear that progress is being made. The World Breastfeeding Trends Initiative’s 2016 report highlighted several gaps in access to breastfeeding support, including deficiencies in clinical training and a lack of integration between the NHS and voluntary sector services. What can be done through the maternity transformation programme to ensure that women can access, and health professionals can provide, the best-quality infant feeding advice right across the country?

[Mr Hunt]

The hon. Lady is absolutely right to highlight that area. It is one of six high-impact areas we are focusing on throughout the country. We are making progress, but we know we could do a lot better.

Oral Answers to Questions

Alison Thewliss Excerpts

Tuesday 19th December 2017 Commons Chamber

[Steve Brine]

Men may not be very good at wrapping at this time of year, but they need to get this one right. I welcome Public Health England’s “protect against STIs” campaign, which was launched last week and aims to reduce rates among 16 to 24-year-olds, and I encourage young people having fun this Christmas to do so sensibly.

[Alison Thewliss (Glasgow Central) (SNP)]

There is an increasing trend for women to share breast milk over the internet with no recourse to the milk banking guidelines from the National Institute for Health and Care Excellence. Will the Minister meet me, and other members of the all-party parliamentary group on infant feeding and inequalities, to discuss the matter further and to ensure that breast milk can be used safely?

[Jackie Doyle-Price]

As the hon. Lady says, it is important for us to ensure that anything that happens in this space is safe, and I should be very pleased to meet her and other members of the all-party group.

Oral Answers to Questions

Alison Thewliss Excerpts

Tuesday 14th November 2017 Commons Chamber

[Mr Hunt]

I am happy to offer my congratulations, because that is an incredibly important area. We have done really well on clostridium difficile and MRSA infections, but the rates of other infections such as group B strep and E. coli are higher than they need to be. In fact, I am speaking at a conference on infection prevention and control this afternoon.

[Alison Thewliss (Glasgow Central) (SNP)]

Only 57% of maternity units in England have UNICEF baby-friendly accreditation, compared with 100% in Scotland and Northern Ireland and 79% in Wales. What plans does the Secretary of State have to increase UNICEF baby-friendly accreditation to all maternity units?

[Mr Hunt]

Despite the rivalry that sometimes happens between our nations, I actually have a lot of respect for some of the patient safety initiatives in Scotland, and we will certainly look at this. However, we have what we think is the most ambitious plan to improve maternity safety not just in the UK but in Europe. This is one of those areas that the two countries should work together on.

Contaminated Blood

Alison Thewliss Excerpts

Tuesday 11th July 2017 Commons Chamber

[Alison Thewliss (Glasgow Central) (SNP)]

I pay tribute to the hon. Member for Kingston upon Hull North (Diana Johnson) for her sterling work, and to Andy Burnham and so many others who have pursued the issue relentlessly over the years. It is a testament to their commitment that they have kept going, even when all hope seemed to be lost.

I also pay tribute to the hon. Member for Oxford East (Anneliese Dodds) for her excellent maiden speech. I am sure that we share a lot of common ground, and I hope we will work together over the coming months and years.

Before Parliament broke up back in April, Andy Burnham laid a challenge to all the parties to include in their manifestos a commitment to the victims of contaminated blood. I am very pleased and proud that my party saw fit to do so. Our manifesto stated:

“Victims of contaminated blood products deserve answers.”

In 2008, the SNP Scottish Government established the Penrose public inquiry, which reported in 2015. In government we have also worked with stakeholder groups to develop a substantially improved compensation scheme, which is now the best in the UK. SNP MPs will support a full public inquiry for the rest of the UK, and I am very proud to stand by those words today.

I am incredibly pleased and surprised to hear that the Government have changed their stance. When we last met in April it did not feel as though much more was going to happen, so the change in the Government’s attitude is very welcome. I do not want to appear churlish, but the changed numbers in this Parliament mean that some things that seemed impossible before are now open for debate. I am very glad about that.

There has been recognition of the limitations of Penrose and what the Scottish Government could do. We could not compel witnesses to attend and we had a limited remit to consider negligence, so it is good that we now have this opportunity to relook at all the issues. I am also glad to hear the Government commit to working with the devolved Administrations, because we have the experience of an inquiry, limited though it was. I hope to hear more about the ways in which the Scottish Government and victims in Scotland will be brought in as part of the process.

In the April 2016 debate, I mentioned my constituent Maria. I have not been able to reach her to ask for her views, because this debate and the Government’s announcement came so very late in the day, but I want to put on the record again that Maria contracted hep C in 1981 from a blood transfusion following a miscarriage. She did not find out for many years. Even when she sought a diagnosis, it took two years to get it. She would want this House to know that, having lived with hep C for 36 years, she does not want charity. She does not want vouchers or handouts; she wants to be treated fairly and with dignity. That is the very least she deserves from this process.

[Layla Moran (Oxford West and Abingdon) (LD)]

The Oxford haemophilia centre serves my constituents. I thank the hon. Member for Kingston upon Hull North (Diana Johnson) for securing this debate. Does the hon. Member for Glasgow Central (Alison Thewliss) agree that victims want not just transparency but justice, and that if we find evidence of a cover-up, the individuals involved should face the full force of the law?

--- Later in debate ---

[Alison Thewliss]

I absolutely agree. I am glad that the hon. Lady raised that point, which I was about to move on to. Without that justice, the victims will never feel as though they have been well served. They will feel as though they have lost out and there has been no justice.

The inquiry must look at the changing of medical records. Somebody must have issued a clear instruction to do so, because such cover-ups do not happen by themselves. We must find the lines of responsibility whereby people were told, “Delete those records, and don’t tell people about this. Test people, but do not let them know.” All those outstanding questions must be answered, and we must find out what was known, when and by whom. In the search for answers, we must recognise that some questions cannot be answered because the relevant information is held in the United States. Ministers must reach out and speak to their counterparts in other parts of the world to try to find answers. Ways must be found to co-operate with the American Government.

We need to be able to have confidence in our current processes. I understand that the US started screening blood donations in 1983, but we did not start doing so until 1991. Every time I donate blood, I am conscious that the integrity of the system is based on my honesty, at every stage. We must find better ways to ensure that our systems are as robust and secure as possible.

The Government have said that during the inquiry they will reach out to those who receive funds through the current schemes. I hope that that will be done in co-operation with the devolved Administrations where they have responsibility. I encourage the Government to find as many ways as possible to contact people and let them know what is happening. In some cases, the individual concerned may have died and their family members may not be aware of what is going on. We must reach out as widely as possible through advertising, social media and all other means at our disposal to involve as many people as possible in the inquiry.

People must be supported to attend and give evidence to the inquiry. The experience may be very traumatic for some, and they may need counselling or financial support to enable them to attend and to ensure that the required documents reach the inquiry. The Haemophilia Society has said that we must treat such documents with the utmost care and protection. People are, quite rightly, sceptical about how their documents will be treated, and we must enable them to trust that if they submit evidence, it will be not be lost. That goes for Government evidence as well as for private evidence belonging to members of the public.

We have waited far too long for justice on this matter. I encourage the Government to maintain the sense of urgency during the inquiry, to make sure that it is not dragged out over many, many years without the victims receiving answers. The victims have waited far too long for justice, and they should not have to wait much longer.