Young-onset Parkinson’s Disease

Debate between Nick Thomas-Symonds and Jim Shannon

Monday 6th March 2017 Commons Chamber

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

During the 2015 general election campaign, I attended a concert in my constituency in aid of Parkinson’s. It was organised by a constituent of mine, Len Burbidge, and I want to pay tribute to the tremendous work that Len does on this issue locally. That night, I signed a pledge to raise awareness of Parkinson’s in this House, should I be elected, and I have sought to do that in parliamentary debates and as a member of the all-party group on Parkinson’s. I pay tribute to the group’s chair, my hon. Friend the Member for Bridgend (Mrs Moon), for the work that she does, and to the work that is done for the group in the other place by Baroness Gale of Blaenrhondda.

I am delighted to have secured the debate this evening, particularly because it is now 200 years since Dr James Parkinson published his famous 1817 essay “An Essay on the Shaking Palsy”. Some 60 years later, a French doctor, Jean-Martin Charcot, spoke about “la maladie de Parkinson”, from which we have coined the term “Parkinson’s disease” to describe the condition. According to figures from Parkinson’s UK, some 120,000 people are affected by the condition in the UK today. We know about the three principal symptoms—the tremor, the muscle stiffness and the slowness of movement—but unfortunately there is still no cure 200 years later.

When I talk about the number of people affected by the condition, I must point out that the data available on those with Parkinson’s are perhaps not as accurate as we would like. We know that several thousand people of working age have the condition. I want to pay tribute to Gaynor Edwards from the charity Spotlight YOPD for the work that she has done to raise the profile of this issue. She has guesstimated that there are 6,500 people affected who are under the age of 50, but it would be a significant step forward if we could accurately estimate not only the prevalence of Parkinson’s in the population as a whole, but the number of people of working age who have the condition. I would be grateful to the Minister for some assurance that we can look at how the data are collected.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House. We have 4,000 sufferers in Northern Ireland, one in 20 of whom was diagnosed with Parkinson’s when they were under the age of 60—in other words, still of working age. He spoke about the importance of finding a cure, but in order to do so, we need a research programme. Does he agree that the Government should be placing more emphasis on early diagnosis and finding a cure?

[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.

Dementia and Alzheimer’s Disease

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.

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

I congratulate the hon. Gentleman on securing this debate on such an important topic. On the increase in numbers, does he agree that some vital work is being done on mitigating the symptoms of Alzheimer’s, not least in many care homes and residential homes in my constituency? Equally, we have to focus on palliative care for people with Alzheimer’s at the end of their life.

[Jim Shannon]

I was going to come to that issue. I thank the hon. Gentleman for that intervention. It is not just about the diagnosis of dementia and Alzheimer’s, but about the follow-up, the path of care and how we help the whole way through. I will touch on some of those things later in my speech.

We must not abandon or diminish our efforts to find a cure. We have to take into account the reality we face and carefully plan for the future, so that all those with dementia and Alzheimer’s can get the care and support they so desperately need. As the hon. Gentleman said, that is the issue we have to address.

--- Later in debate ---

[Jim Shannon]

My hon. Friend makes a salient point. He always hits on the issues that we should all be aware of.

I welcome the fact that the Government are developing a new carers strategy. I can only hope that this debate will raise awareness of the need for urgent and large-scale reform of the way in which the Government treat carers. I welcome the dementia-friendly communities strategy and the clusters of dementia groups. In my constituency we have a number of homes where patients with dementia and Alzheimer’s are looked after directly. I also have a dementia friends group who come together in the Church of Ireland church in Newtownards. They bring together all the people of Ards and North Down who want to participate. They give them art, they give them music and they give them a chance to interact, and it is marvellous what happens.

Briefly, I want to mention some of the things that happen in Northern Ireland. The Northern Ireland dementia strategy has a list of achievements to its credit in recent times, which I bring before the House to help the debate: £6.25 million in the Dementia Together Northern Ireland project; the appointment of dementia champions—perhaps the Minister will give us some thoughts about dementia champions in the whole of the United Kingdom, because things are happening, but I would like to hear about them.

[Nick Thomas-Symonds]

On dementia champions and dementia friends, will the hon. Gentleman join me in praising the wonderful work that is done by them, especially in providing sufferers with familiarity—the point made by the hon. Member for Belfast East (Gavin Robinson)? One of the ideas is to provide sufferers with things such as memory boxes to trigger the memory, which helps terrifically with this dreadful disease.

[Jim Shannon]

I thank the hon. Gentleman for his intervention.

Cancer Drugs

Debate between Nick Thomas-Symonds and Jim Shannon

Tuesday 20th October 2015 Westminster Hall

[Jim Shannon]

I thank the hon. Lady—my hon. Friend—for her contribution, and I am happy to add my support. Indeed, I attended a meeting of the all-party group on off-patent drugs last Thursday, and it is important that we support its campaign.

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

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Strangford (Jim Shannon) on securing a debate on an important issue that affects many families—perhaps all families—across the UK. I intervene at this point because the hon. Member for North Down (Lady Hermon) has mentioned the private Member’s Bill that I am sponsoring—the Off-patent Drugs Bill. Would the hon. Gentleman agree that there are problems affecting the prescription of off-label drugs? It happens inconsistently across the country, and there are problems of information and a conservatism about prescribing off-label. Does he agree that those problems are best dealt with by legislation?

[Jim Shannon]

We have hit on an issue that resonates across the whole House. Let us put on the record the fact that there is a goodly representation of other parties today, and those hon. Members are here because they have an interest in the matter. I am pleased to see the Minister in his place. He tells me that I never miss one of his debates, and I do not know whether this is his debate or mine, but we are both here for the same purpose. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place as well.

Survival rates are improving, and that development is great for everyone.

--- Later in debate ---

[Jim Shannon]

As the hon. Gentleman says, there are many good examples across the whole United Kingdom of Great Britain and Northern Ireland, where things are done well. We thank the doctors and nurses, who work energetically, and the many charities.

The national target for accessing these life-changing drugs is 19 weeks. The move in Northern Ireland will go a long way towards enabling the health service there to reach that target. My hon. Friend the Member for Belfast East (Gavin Robinson) was correct that we need to focus on that target. Each day in Northern Ireland, 23 people are diagnosed with cancer and 11 people die of it. According to Cancer Research UK, there were 331,487 new cases of cancer in 2011 and 161,823 deaths from cancer in 2012. That tells us a wee bit about the magnitude of cancer and its importance to every person in the whole United Kingdom. More should be done but I can only welcome the recent developments in the Province. I hope that other areas of the country can follow suit by freeing up the funds necessary and introducing legislation to prioritise fighting this awful disease to the best of our ability.

In England and Wales, cancer remains one of the biggest killers, causing 29% of all deaths. Progress has been made and all progress is welcome, but it is opportunities like today when we can really make a difference to the lives of individuals and families from all walks of life. Recent developments across the water—here—are deeply concerning. In September, 16 drugs were removed from the Cancer Drugs Fund list in addition to another 16 drugs that were removed from the list in January.

[Nick Thomas-Symonds]

I congratulate the hon. Gentleman on making that point. Does he agree with me that the removal of Abraxane from the national Cancer Drugs Fund list is particularly concerning given that pancreatic cancer patients, 80% of whom are diagnosed when the cancer has already spread, are often left with a finite and small amount of life? A drug such as Abraxane can make a significant difference to those people and that decision should—I hope it will—be reversed in future.

[Jim Shannon]

The hon. Gentleman must have helped me put my notes together because I have written that one down. It was one of my next points. Yes, we are concerned about that. I look forward to the Minister’s response on that point because, quite clearly, it is hard to understand why Abraxane should be removed given that it at least extends the life of many people.