Young-onset Parkinson’s Disease

Debate between Madeleine Moon and Nick Thomas-Symonds

Monday 6th March 2017 Commons Chamber

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman.

I have been provided with a number of emails by the charity Spotlight YOPD, and I have permission to use them in this debate. Interestingly, one of those contributions is from someone with Parkinson’s who is based in Edinburgh. They say:

“My main concern is the lack of clinical trials to participate in, compared to many other conditions, there’s hardly anything at all going on for PD.”

I will talk in a moment about the care that people receive, but I agree with the hon. Gentleman that research into a cure is absolutely central to this debate.

I want to talk about a constituent of mine, Hayley Huxley, to whom I have been speaking in recent weeks. She was diagnosed with Parkinson’s at the age of 25. She is now 30 and has two young children. I want to reflect on what she set out in an email to me, because it is indicative of what people go through. She says:

“It all started when I was 24. I went back to work after maternity leave on my first child and noticed I couldn’t use my right hand properly to write. I went to the doctors 3 times and they just put it down to carrying a car seat, pulled muscle, etc. The 4th time I went I got referred to a specialist and went for tests”,

and she was diagnosed at 25.

Hayley speaks movingly of the challenges that she has faced, such as working part time due to fatigue and having to

“fight my way through the PIP assessments”.

In the end, she was able to get the appropriate number of points. She also speaks about access to a neurologist, saying that she has not seen one since she was diagnosed five years ago. Indeed, she has not seen her Parkinson’s nurse since July 2015. She speaks about managing her medication, going through childbirth without taking medication for eight months, the rigidity in her right arm and leg, and the restless leg that she gets.

[Mrs Madeleine Moon (Bridgend) (Lab)]

Is my hon. Friend aware of the Parkinson’s KinetiGraph watch? It is new on the market and was developed by Global Kinetics Corporation. It monitors the medication taken by a Parkinson’s patient and will send a message over the internet to a consultant with information about whether the medication is at the right level and has been taken at the right time, thereby enabling people to stay in work longer and to control their tremors much better.

[Nick Thomas-Symonds]

I am grateful to my hon. Friend for that point. The device sounds remarkable and could assist people with the condition.

Hayley spoke about the restless leg she experiences if her medication is not taken at the right time or if she is under stress. The way in which Hayley has dealt with the condition is inspirational. When I saw her yesterday in advance of this debate, she said that while those who fit into what is called the young-onset group have particular needs, there is a collective sense of need for everyone with the condition. The photographer who was with us yesterday, Ron McCann, also has Parkinson’s and is aged 69. Over the course of the weekend, I was contacted on social media by a member of the male voice choir in my hometown of Blaenavon, who spoke about a chorister in his 80s who is battling the condition and has found that singing has assisted him.

While there are issues that unite all with the condition, including access to the drug Duodopa, which was the subject of a recent debate in Parliament, those who are diagnosed at a younger age have specific needs. The first issue is with being diagnosed in the first place, because the condition can go undiagnosed. Those who have contacted Spotlight YOPD talk movingly about what happens at that moment of diagnosis. Keith from Newark says:

“Parkinson’s for younger people (under 50) is a different kettle of fish...It completely changes your life but you don’t know at the time and no one actually tells you.”

Gaynor from Rye says:

“I’ve never felt quite so lonely as when I was diagnosed. Mourning for the future I thought I had—suddenly old before my time with a fear of dependency—and no one there to gather me up; no one to depend on.”

Jordan, 21, an MSc student in Liverpool, says that

“the GP kept saying, ‘He’s too young, he’s too young,’ and said it was a psychological problem.”

Even when the diagnosis is established, there then comes a whole set of new challenges. On top of dealing with the condition, there are all the pressures of family and working life.

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman that local support groups are hugely important, which leads me on to the mental health issues that often come with Parkinson’s. Although access to a neurologist is highly important, we must not neglect access to mental health support.

Prescription charges remain a bone of contention in England. Pre-payment certificates are available to reduce costs, but there is still a cost. England could do with following the lead set by the Welsh Government in 2007 by abolishing prescription charges altogether.

There are also issues of engagement with medical services. Again, I can refer to specific cases. Jon, a father of three who was diagnosed at the age of 49, says:

“People with Parkinson’s can often have problems in hospital.”

Why? People with Parkinson’s are often deprived of their medication because, obviously, they hand in their medication when they go into hospital, yet maintaining a regular medication regime is very important and the person themselves is often best placed to do that.

I spoke a moment or two ago about access to neurological services. Alison, a mother of three based in Cheltenham, says:

“I feel let down by an NHS system that offers me one 10 minute appointment with a neurologist each year and I have to chase this to get it.”

Neurological services clearly need to be more accessible than that.

I do not make my next point in an ideological way, and I am pleased that the former Minister with responsibility for disabled people, the hon. Member for North Swindon (Justin Tomlinson), is in the Chamber. Irrespective of political views, I want to address the efficiency of the social security system as it actually works. I pay tribute to the work of Parkinson’s UK, and particularly to that of Natasha Burgess. On employment and support allowance, for example, which will involve a work capability assessment, the problem with something like Parkinson’s is that it is a variable condition.

[Mrs Moon]

Unpredictable.

Leaving the EU: Infrastructure in Wales

Debate between Madeleine Moon and Nick Thomas-Symonds

Tuesday 17th January 2017 Westminster Hall

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship for the first time, Mr Flello. I congratulate my hon. Friend the Member for Cardiff South and Penarth (Stephen Doughty) not only on securing the debate but on his comprehensive and thoughtful setting out of the issues. It is always a pleasure to follow my hon. Friend the Member for Bridgend (Mrs Moon); and I am sure that all Members from south Wales would give testament to the fine shopping at McArthurGlen.

[Mrs Moon]

And Sainsbury’s.

[Nick Thomas-Symonds]

Absolutely. It is also a pleasure to follow my hon. Friend the Member for Newport West (Paul Flynn). Whenever my hon. Friend speaks we learn something new; I am sure we are all very grateful for that. As to the hon. Member for Brecon and Radnorshire (Chris Davies), I am slightly worried about the way he reads facial expressions. He may end up getting his enemies and friends the wrong way round in future.

I totally accept the result of last year’s referendum. The Torfaen local authority area had a 59.8% leave vote, and the Torfaen parliamentary constituency makes up the substantial part of that local authority. It is crucial that the result should be respected; but whether people voted remain or leave, they deserve—in Torfaen and across Wales—a Government determined to deliver economic prosperity and to have a clear, coherent negotiating strategy to that end. Before I entered the House I was, among other things, a barrister and a mediator. I know only too well that no one should reveal the fine detail of their negotiating strategy before they begin; but that is not what the Government are being asked to do. We have heard from the Prime Minister today, but what concerns me is that not once has she given a coherent vision of post-Brexit Britain. As my hon. Friend the Member for Cardiff South and Penarth pointed out, we are left with a nightmare scenario of being an island, almost like a giant tax haven, off the end of the EU, instead of a place where inward investment and the floor of workers’ rights established by the EU will continue post-Brexit. We are also left with the impression that the Prime Minister is far more interested in the internal politics of the Conservative party than in the national interest.

Today’s debate is specifically about infrastructure. Wales has benefited tremendously from EU structural funding. When we talk about infrastructure, we must think about it in different senses. We have, of course, physical infrastructure, which my hon. Friend the Member for Cardiff South and Penarth talked about. I have already mentioned the south Wales metro project, which is one of many on which I hope the Minister will give far firmer guarantees. However, there is also the question of digital infrastructure. I commend the Welsh Government for their aim of every household in Wales having access to superfast broadband, and the great progress that has been made. Clearly, there is more progress to be made. I suggest that digital infrastructure will be vital to Wales’s future. There has been an increase in flexible working and the number of people working from home, and a substantial number of people are self-employed throughout the United Kingdom now; all of them will be reliant on the broadband speed available to them at their business premises and at home. That infrastructure, too, must be funded. The Government must have a coherent vision so that, without the European structural funds coming down the line, such things can be realised.

The Minister and the Secretary of State for Wales can play a crucial part in what happens, but they must be the voices of Wales in the Government, standing up for funding. They cannot become, in the years to come, the Government’s voice in Wales. The referendum has of course gone, and we have to concentrate on how Wales is to have a substantial number of highly skilled jobs, such as those in Bridgend that we heard about, and others mentioned by my hon. Friends. That is the vision of Wales that we must deliver, and I hope that the Government will put aside their internal divisions to take it seriously.

Orphaned Open-cast Mines

Debate between Madeleine Moon and Nick Thomas-Symonds

Wednesday 9th September 2015 Westminster Hall

[Mrs Madeleine Moon (Bridgend) (Lab)]

I beg to move,

That this House has considered Orphaned Opencast Mines.

I am grateful for your chairmanship today, Mr Davies. This will be quite a complicated discussion, because I am aware that several colleagues from other areas of the United Kingdom want to take part in the debate. I have said that I will take one intervention from each of them so that they can be engaged, but I feel that it is important that we move forward in tackling this issue.

This is my fourth debate on the subject, in which there is cross-party interest. I am so sorry that I did not look for a 90-minute debate or another Backbench Business debate, because the level of interest would have made that feasible. The Minister is the third Minister I have discussed the problem with. Let us hope that this is the last debate needed and that she is the one who will finally address the problem of open-cast sites, so that communities up and down the country can at last feel that their problems are being addressed and that help is at hand.

Equally, let us hope that the companies that have abandoned sites and not completed their commitments to restoration understand that they cannot ravish the countryside in the name of profit and greed and then simply walk away, leaving their responsibilities for others to take on and finance.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Will my hon. Friend give way?

[Mrs Moon]

I will. This is your one intervention.

[Nick Thomas-Symonds]

It is a pleasure to serve under your chairmanship, Mr Davies, and I congratulate my hon. Friend on securing the debate. I agree entirely with her point about land restoration and companies not running away from their responsibilities. Does she agree that we must also ensure that the application process is a broad one, which takes into account public opinion and anticipates future problems?

[Mrs Moon]

I assume that my hon. Friend is talking about the need to take into account public opinion in the restoration process. That is absolutely critical. My community of Cynffig Hill are very clear that they want the void on the Parc Slip site to be filled in, because they think it is highly dangerous, and any restoration must include that.

The Coal Industry Act 1994, which received Royal Assent under the Major Government, privatised the remains of British Coal and gave the then Department of Trade and Industry powers to ensure full continuity from the coal corporation to private companies. The Department committed to checking carefully the financial status of successor companies as part of the bid process. Too many communities have found those to be empty promises, and the result has been environmental devastation, pollution and failure.

In the case of Parc Slip, the company that eventually became Celtic Energy bought the site with the inclusion of a 10-year restoration bond-free period. For 10 years, no money was put aside for restoration, the company having paid up front to the Major Government a sum that was, it argues, to include the cost of that 10-year restoration. The Government took the sale money and coal levy payments for 13 years; Celtic took the coal; and the communities of Margam, Cefn Cribwr, Cynffig Hill and Pyle have been left with the consequences.

Parc Slip is mostly in the constituencies of my hon. Friends the Members for Aberavon (Stephen Kinnock) and for Ogmore (Huw Irranca-Davies), but most of the residents affected by the site are in Cynffig Hill. Most of them live about 300 metres south of the void. The site is more than a mile and a half long, and half a mile across. It includes the void, which contains foul water that rises and falls with the seasons. At one point this winter, there was huge fear that the void would overspill and water would cascade down into the community in Cynffig Hill.

After further planning applications, an escrow account was belatedly established, which contains £1.5 million. However, the full restoration costs of the site are estimated at £57 million. Roads, footpaths and farming land have been lost, and promises to restore them and sell back the farmland have been reneged on. I do not intend to repeat the horrific story of Celtic selling off its restoration liabilities to Oak Regeneration, which is based in the British Virgin Islands, and the subsequent dispersal of £73 million elsewhere in the company—millions of pounds that could have paid for the restoration went to pay those involved in establishing paper offshore companies.

The Serious Fraud Office and the judiciary have also failed my community. In February 2014, fraud charges against six individuals, including members of Celtic Energy, were dropped. They had been charged with conspiracy to defraud Neath Port Talbot, Bridgend and Powys Councils, as well as the Coal Authority; and with

“deliberately prejudicing their ability effectively to enforce obligations to restore cast mining sites to open countryside and/or agricultural use”.

That relates to the Oak conspiracy.

Mr Justice Hickinbottom said that there had been no economic injury to the local authorities or the Coal Authority. He said that although the transactions may have been dishonest, they were not illegal, and that Celtic was obliged to restore the land to countryside and agricultural use once mining was complete. I cannot begin to tell the Minister—or you, Mr Davies—how that decision is viewed in Cynffig Hill, or indeed in Cefn Cribwr or Margam. It is felt that everyone has turned their back on their responsibilities to this site, and the community is left to live with the most horrific situation.

According to the results of the court case, Neath Port Talbot and Bridgend Councils were not adversely affected, but the reality is that they have been gravely adversely affected, because they have no funds at all to restore the land. Bridgend Council has had a £50 million budget cut. Both planning departments failed to protect the local community over a number of planning applications and conditions applied. One thing is clear, however. Whatever restoration comes out of any discussions between the planning departments and Celtic—however minor the results that £5.5 million can achieve—the void must be made safe.