PACE Trial: People with ME

Debate between Layla Moran and Carol Monaghan

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan]

I will make some progress. The PACE trial was used to inform NICE guidelines, which has meant that symptoms have been disregarded, and sufferers are considered to be attention-seeking hypochondriacs or even, in the case of some female patients, hysterical. Although in some ways the lack of belief has been the most difficult thing for sufferers and their families, the impact of the PACE trial and the resulting NICE guidelines is far further reaching. Many sufferers have reported major difficulties in accessing financial support. Employment and support allowance assessments do not consider the impact of exertion on a person’s ability to function on subsequent days, and personal independence payment assessments, which consider ME to be psychological following the PACE report, mean that sufferers struggle to access that entitlement and simply rely on family members.

Conflicts of interest in the trial are also deeply worrying. The former chief medical adviser to the DWP sat on the trial’s steering committee, and ultimately the results of the trial have been used to penalise those with ME. When we consider the relationship between key PACE investigators and major health insurance companies such as Unum, the trial takes on a far more sinister slant. Sufferers have reported that their health insurance company would pay out only if they undertook a programme of GET—an impossible task, as the insurance giants knew.

It is not only adults who are affected. Children with the disease have been subject to care proceedings because of widespread misunderstanding among health workers. ME has been mistaken for school phobia, neglect or even abuse.

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

Will the hon. Lady give way?

[Carol Monaghan]

I will in a moment. One mother contacted me, saying:

“Our 12 year old son was seen at specialist ME centre by a consultant who prescribed GET. In one year this ‘programme’ caused our youngster’s body to develop higher and higher levels of inflammation, he began limping, was in continual pain from not only the ME headaches but joint and foot pain. The comments were ‘well he managed to limp into my office’, ‘you were very active, now since the virus you are very inactive, so you will have this pain due to lack of exercise’.

GET caused his body’s immune system to go into overdrive. My son developed Juvenile Idiopathic Arthritis. This was treated by a paediatric Rheumatology Consultant who was shocked it had been left so long and told my son that his toes would be permanently swollen even after treatment as the bones had grown abnormally during the inflammation”.

[Layla Moran]

I, too, have been contacted by parents in my constituency. In the case of one constituent, her daughter took a year to be diagnosed and missed an entire year of school as a result. The effect on children’s lives at a very young age is palpable.

Space Industry Bill [Lords]

Debate between Layla Moran and Carol Monaghan

3rd reading: House of Commons & Report stage: House of Commons
Tuesday 6th February 2018 Commons Chamber

[Layla Moran]

The hon. Gentleman is right, and my constituency is affected by such uncertainty.

I repeat a point that I made during the passage of the Nuclear Safeguards Bill: we must remember that this is not just about funding. At a recent hearing of the Public Accounts Committee, of which I am a member, witnesses were clear that the most valuable asset we have as a nation is our ability to attract human capital. To put it bluntly, the funding follows the brains. There is real consternation across the entire science industry that European scientists are actively looking to move, if they have not already, to more welcoming countries. Their lives are more than just their jobs; this is about where they live, love and participate in the community, so the tone of this debate matters hugely. It is therefore critical that we maintain freedom of movement for the world-class scientists, specialists and technicians who contribute to the space industry, so that we keep those brains and the funding here.

Patrick Wood, CEO of Surrey Satellite Technology Ltd, an existing supplier to Galileo, has said that

“there are still a lot of unknowns”

about whether UK space companies will be able to access high-quality staff post-Brexit, noting that UK space infrastructure companies

“have a high percentage of staff that come from across Europe”

partly due to a lack of UK applicants. Aerospace companies are heavily reliant on the rapid movement of workers between different sites. A favourite fact of mine is that Airbus moved employees 80,000 times between the EU and the UK in 2016. It even has its own jet shuttle between Toulouse and Broughton. Any additional border checks between the UK and the EU could therefore prove a significant burden.

On Galileo, the European Commission is demanding the right to cancel existing contracts with UK companies that are constructing the £10 billion Galileo satellite navigation system unless the UK negotiates a new security relationship with the EU. If no long-term agreement can be found, UK companies may only be able to retain their contracts by setting up EU subsidiaries. With them will go the tax take, the brains and the supporting jobs.

Finally, I turn to the crucial effect of leaving the single market on supply chains within the UK space industry. Last year, I asked the Minister, in his former role, a series of parliamentary questions about the impact on the UK space sector supply chain of leaving the single market, but sadly there was not much in the answers to give heart to the industry. It has just not received the answers that it needs. Stuart Martin, CEO of the Satellite Applications Catapult said that

“Brexit represents a risk to the United Kingdom in sustaining its leadership position”

among sectors such as satellite manufacturing and navigation services. He also stated that the UK needs to sustain its leadership role within the European Space Agency and maintain access to the single market. Before anyone says, “But we will stay in the European Space Agency,” yes we will, but we must not forget that a quarter of its funding comes from the EU.

It is clear that the industry needs certainty on all those issues. We have had warm words, but not enough action. The Government’s shambolic handling of impact assessments and sectoral analyses, as well as this week’s uncertainty over future customs arrangements, is not inspiring confidence among the space industry. There are few specific commitments or guarantees in the Bill, so it is not unreasonable for the Government to publish an assessment of the sort that new clause 1 would require, and I hope that the Minister will consider doing so.

[Carol Monaghan (Glasgow North West) (SNP)]

I start by passing on the apologies of my hon. Friend the Member for Central Ayrshire (Dr Whitford), who has been heavily involved in the Bill since the beginning. Unfortunately, she is extremely unwell this week and has uncharacteristically heeded her daughter’s advice by staying at home, but she is no doubt watching from her sickbed.

I rise to support new clauses 1 and 2, which attempt to ensure a proper assessment of the potential damage that an extreme Brexit could cause our space industry. During the passage of the Bill, we have had a glimpse of the opportunities ahead for the UK’s space industry, but this relates to the wider reaches of the EU. The EU funds space research through Horizon 2020, and we want to ensure that we remain a player beyond that point. Although the European Space Agency is separate from the EU, it does still receive significant funding from it, so we need to know whether the Government have made any assessment of the impact of Brexit on our space industries. Given the previous impact assessment fudge, the answer is probably, “Probably not, but if we have, we will not be publishing it anyway.” That is simply not good enough. The new clauses make it clear that the Government will make that assessment and will publish it. If they do not accept these amendments, the question must be: what do the Government have to hide?

The European Commission has made it clear where it wants to go on space, so do the Government intend to remain part of the strategy and programme it has outlined? If we are not an integral part of the European space programme, what will be the impact on our viability as a spaceport centre, compared with other spaceports located within the European family?

How will we retain access to EU research and development projects, which are so important to our space industry? As has been mentioned, how will changes to freedom of movement affect this industry, an industry that exchanges talent across frontiers on a regular basis? Not all that talent will be at a salary threshold that allows easy access to the UK. Will we retain full access to programmes such as Galileo and Copernicus? Will we be marginalised in EU procurement decisions?

Those are all important questions for the Government to consider now, and they should be included in any impact assessment.

Euratom Membership

Debate between Layla Moran and Carol Monaghan

Wednesday 12th July 2017 Westminster Hall

[Carol Monaghan]

No, I am going to make some progress.

Any future negotiations on whatever membership of Euratom we might have—I hope that it is full membership, but there could be associate membership—must include the Scottish Government, as they are dealing with the regulation of nuclear facilities in Scotland. Some people have talked about putting our own regulatory framework in place. Of course, we could get our own regulations in place, but the problem is that the clock is ticking, we do not have a lot of time and producing these frameworks takes many years, not 20 months. That is a real issue.

A number of hon. Members have mentioned medical isotopes. The Euratom Supply Agency ensures the security of supply of medical isotopes for all members of Euratom. My hon. Friend the Member for Central Ayrshire (Dr Whitford) gave us some statistics. She said that 500,000 diagnostic scans and 10,000 cancer treatments are carried out annually as a result of those isotopes. However, we cannot produce our own medical isotopes and must therefore import them. Medical isotopes have very short half-lives, which means they need to be transported quickly, and there are only a few facilities in the world that produce them. A number of the reactors that produce medical isotopes are coming to the end of their useful lifespan, which means that in future there could be real problems with their supply worldwide anyway. This is not the time to take ourselves out of the agency that ensures that we have a supply.

[Layla Moran]

Does the hon. Lady agree that the real issue with these radioisotopes is that their half-lives are so short that any delay in getting them to the UK—even hours—means that they will have expired?

[Carol Monaghan]

As a fellow physics teacher, the hon. Lady will know that something such as technetium-99, which is used in medical diagnostics, has a half-life of six hours, which means that after 24 hours it is pretty much useless, or its activity has dropped to a level that makes it inert. These isotopes must be transported and used very quickly after they are produced.

The hon. Lady has already given us a physics lesson on fusion, so I will not do that, but fusion is a field in which we are world leaders in the UK. The hon. Member for Henley (John Howell) talked about JET in his constituency. It is one of the world’s most important facilities and one of Euratom’s main facilities, so we need to ensure that funding continues. JET currently receives about £48 million annually. The contract runs to the end of 2018, so we must ensure that pulling out of Euratom does not affect future funding.

We must ensure that transitional arrangements for nuclear safeguarding, trade and funding are in place until the EU-UK negotiations are complete, and that should be done with the full consultation of the nuclear industry and community. We need to retain our membership of the European observatory on the supply of medical radioisotopes and continue to work with Euratom and global partners to mitigate any shortages of medical isotopes. We need to ensure that Euratom funding for our nuclear research projects continues. Finally, the UK Government must involve the Scottish Government at every stage of the negotiation process, to ensure that the deal reached works for Scotland’s nuclear industry as well.