Young-onset Parkinson’s Disease

Andrew Selous Excerpts

Monday 6th March 2017 Commons Chamber

[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.

[Andrew Selous (South West Bedfordshire) (Con)]

I am a huge admirer of the hon. Gentleman’s speech and I commend him on bringing this matter before the House. Does he agree that cases such as those that he has outlined can often be helped if there is a local support group? Such groups provide a lot of information and can effectively lobby local health services on matters such as Parkinson’s nurses? Would he recommend the setting up of such groups around the country?

[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.