Young-onset Parkinson’s Disease

Madeleine Moon Excerpts

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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (David Mowat)]

Let me start by congratulating the hon. Member for Torfaen (Nick Thomas-Symonds) on his speech, which the former Minister, my hon. Friend the Member for North Swindon (Justin Tomlinson), called an important one. It is just that, as this is an important subject. It is salutary to think that it is 200 years since this terrible disease was first discovered and we are still some way off finding a cure for it. I know that over the past year or so the hon. Gentleman has asked many questions in Parliament, both written and oral, on this subject. I congratulate him on doing that, because it is only by people doing that that we will continue to keep awareness high.

I also thank the hon. Member for Bridgend (Mrs Moon) for the work she does on the all-party group and for demonstrating the kinetic watch. I had not seen one before this evening, but I look forward to seeing it perhaps after this sitting.

[Mrs Moon]

I met people from Global Kinetic on Friday, when they gave me the watch. In September or October, this watch will also have a docking station, which will mean that on a daily basis the consultant neurologist will be able to get a pattern of sleep, movement and medication consumption from a patient. We hope that will cut the need for neurologist appointments, as is happening in some areas, and I hope that the Minister will want to meet Global Kinetics.

[David Mowat]

Indeed. I am sure other brands are available—

[Mrs Moon]

No, they are not.

[David Mowat]

Well, as I was saying a few moments ago, there is no cure for this disease but it is possible to manage the symptoms and alleviate them. However, to do that we have to have a diagnosis, and that is the issue we are talking about today, particularly in the case of early-onset Parkinson’s disease.

On the prevalence of the disease, something like 130,000 people suffer from it—that is likely to be 160,000 by 2020—and 95% of them are over 60 years old. Because of that fact, there is a tendency in the medical profession and, indeed, in society at large, to think that it is a disease of older people. To an extent that is true according to the statistics, but we also know that something like 5,000 or 6,000 people under 50 have the disease. I will talk about the statistics a little more later, because the hon. Member for Torfaen did challenge them, and it is true that the numbers are all estimates. Nevertheless, the number I have is that something like 400 people under 40 have the disease. Incredibly, it is thought that a few dozen people get the disease under the age of 20, which is a terrible thing as it means that it is with them for their entire working lives.

Parkinson’s is a progressive disease caused by the death of cells containing dopamine. As we have heard, it causes tremors, slowness, speech impediment and gait disorder. Its severity varies, as recognised in some of the points made about the Department for Work and Pensions. There is no cure; the best we can do is to manage the symptoms by trying to address the lack of dopamine through techniques such as brain stimulation, and apomorphine is the most commonly used drug. The hon. Member for Torfaen mentioned the recent debate on Duodopa; I do not intend to go over that in detail, other than to say that it is very much a minority treatment, with something like 75 people receiving the medication. It is typically used when other treatments are not successful.

We all—the Government and the country more generally—need to build awareness of the prevalence of early-onset disease. The NHS Choices website has information on the local and national support groups we heard about a few moments ago. Parkinson’s UK does a huge amount of work in this area, and I would of course be happy to meet it and the hon. Member for Torfaen.