Young-onset Parkinson’s Disease

Justin Tomlinson Excerpts

Monday 6th March 2017 Commons Chamber

[Nick Thomas-Symonds]

I agree entirely with my hon. Friend. That point is particularly pertinent because of the number of people who are succeeding on appeal.

I have an email from Phil from Kent, who was diagnosed with Parkinson’s at the age of 45. He says:

“In…2015 I was awarded 17 points (the Higher Rate) for the Daily Living Component and 10 points…for the Mobility Component of Personal Independence Payment.”

He felt that that was accurate, but the assessment was downgraded when he was seen a year later. He has an appeal ongoing, but he simply says this:

“I want the DWP to understand that Parkinson’s disease is a degenerative condition…It does not get better!”

That is precisely right.

The Government have the laudable aim of halving the disability employment gap.

[Justin Tomlinson (North Swindon) (Con)]

Before the hon. Gentleman comes off the subject of PIP, I wish to pay tribute. He is making a really important speech, and it is a real credit to Parkinson’s UK, which was one of the most engaged groups during my time as Minister for disabled people—I thank the hon. Member for Bridgend (Mrs Moon) for arranging the initial introduction. I urge the Minister to take the opportunity to meet Opposition Members as soon as possible to explore all these constructive options, which are so typical of the hon. Gentleman. I also wish to thank my local Parkinson’s UK members, who are now holding regular coffee mornings in my office as a way to engage, to share best practice and to continue to highlight the improvements that we all, collectively, need to make.

[Nick Thomas-Symonds]

I am grateful for that intervention from the former Minister. He takes a constructive approach, for which I am very grateful.

The aim of halving the disability employment gap is laudable, but I have a slight concern, in that we also have to recognise that people with Parkinson’s will need support when they leave work, at which point returning will, sadly, not always be a realistic option.

As I sum up, I want to speak about the people who battle this condition. Pete from Brighton says:

“At heart…we YOP suffer a triple indignity: the disease itself, with all that it entails; our not being considered disabled enough by the system; and the lack of awareness ensuring that we are considered to be practically useless by society at large.”

Karen from Birmingham says:

“my medication is not helping me through the night and sleeping is impossible. I am literally paralysed during the night.”

We should not forget the daily battle that people with Parkinson’s face, but nor should we forget where we started this debate—with Dr James Parkinson and that essay of 200 years ago. In addition to having medical expertise, he was also something of a political activist, writing leaflets under the pseudonym “Old Hubert” and speaking about those who lived in poverty. He argued for political reform, and I am convinced that if he was still here today, he would be speaking up for all those who have Parkinson’s, who suffer and who battle with this condition every day. I hope that this debate has at least gone some way to raising awareness of the particular problems that people face.

--- Later in debate ---

[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.

[Justin Tomlinson]

I am delighted that the Minister has agreed to meet Opposition Members—that will be a really worthwhile meeting—but in that vein, as I host our local Parkinson’s group, would he be willing to come to Swindon to meet its members?

[David Mowat]

In principle, I would be delighted to come to Swindon, or my hon. Friend could join the meeting with Parkinson’s UK. I am sure there is a way forward.