Young-onset Parkinson’s Disease
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.
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?
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.
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.
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.
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?
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.
Precisely. A work capability assessment might not be the best way to assess people with a fluctuating condition. Additionally, on the personal independence payment, there are far too many people at my surgeries who end up having to go all the way to a tribunal to be awarded what they should have been given in the first place.
My hon. Friend is making an excellent case. The Minister for Disabled People, Health and Work recently said during a debate that she would be talking to the Treasury and Motability about letting PIP claimants keep their vehicle while they appeal decisions that have gone against them. The removal of Motability vehicles has affected people with young-onset Parkinson’s. Does my hon. Friend agree that we deserve to hear what progress has been made on that issue?
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.
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.
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.
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.
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.
Indeed. I am sure other brands are available—
No, they are not.
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.
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?
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.
It would also be extremely useful for the Minister to facilitate a meeting with another charity called Spotlight YOPD, which has done tremendous work in this area.
I heard that charity mentioned and yes, that would of course be a sensible thing to do; the focus of this debate is on YOPD, so that would be appropriate.
There is an issue with GP awareness and diagnosis, partly because there is sometimes an assumption that if someone is young and has dizziness, aching muscles and some of the other early symptoms, those can be symptomatic of more benign conditions, and it is genuinely quite hard to diagnose young-onset Parkinson’s disease. It is important to note that the Royal College of General Practitioners’ neurology training emphasises that all GPs must have a knowledge of the epidemiology of Parkinson’s. The applied knowledge test, which all GPs, wherever they come from, have to pass before they can be a GP, has modules on Parkinson’s and the fact that it can potentially come to people before they are 50 years old, even though it does not usually do so. It is important that we continue to focus on that.
The National Institute for Health and Care Excellence has guidelines on Parkinson’s. Most relevant is the guideline on the best practice on the diagnosis and management of the disease. The draft is currently out for public consultation and will be updated and reissued in April. That guideline also emphasises the fact that early onset is possible and that if patients present with stiffness and slowness of movement, Parkinson’s needs to be considered, because quite often it still is not.
A second NICE guideline, which is also being worked on, is on the more general theme of suspected neurological conditions, with a particular focus on people outside the normal age ranges presenting with symptoms. That applies to children, young people and adults. Such a focus is potentially useful in the identification of early-onset Parkinson’s.
Once the condition is diagnosed, it is obviously important to start treatment. That tends to imply, in England at least, referring a person to one of the 25 neurological centres around the country. A management plan should be put in place by a multi-disciplinary team, consisting of neurologists, neuro-surgeons, nurses and psychologists. Once that plan is in place, treatment can take place through normal primary and secondary care pathways.
The Minister mentioned psychologists in that list. Does he agree that mental health is a vital part of that package?
I heard the hon. Gentleman say that in his speech, and I agree with him. We know that we have some work to do in our health system generally in getting mental health to catch up with the rest of the ways that we treat health. I use the phrase “parity of esteem”, and that is something that must happen. Younger people with Parkinson’s are unlikely to be in a major support group of others who have the disease at their sort of age. They can feel lonely, isolated and all that goes with that. In particular, the hon. Gentleman mentioned Hayley and her young family. Yes, he is absolutely right to emphasise that issue, as we do need to have much more mental health provision in our GP practices. We are determined to achieve that by 2020, with 3,000 mental health therapists in GP practices in England.
The hon. Gentleman mentioned the workforce and 10-minute appointments. We have increased the number of neurologists working in NHS England by something like 30% since 2010. The figure has increased to 1,300, so something like 300 more neurologists are needed in NHS England. As the incidence of neurological conditions continues to increase—Parkinson’s will continue to increase as the population ages—we will need to continue with that expansion. That is clearly a priority.
I wish briefly to talk about the new neurology advisory group, which was set up in September 2016 and is led by Professor Adrian Williams, a neurologist. A member of that group is Steve Ford from Parkinson’s UK. The group’s role is to better align services across the country. Currently, there is a disparity in treatment between different clinical commissioning groups and different GP practices. To an extent, that disparity is inevitable, but we need to do what we can to minimise it, and that group will be looking to do that. It will also be responsible for working as part of a neurology intelligence network, which is all about getting data. The very first challenge from the hon. Gentleman was that the figures that I had quoted and that he had quoted were all estimates. We do not gather data in the format that can be used. The estimates came from a report of Parkinson’s UK, and they were based on 2009 data. We need to do much better than that. It is only by having more reliable data that we can track the way in which the disease is developing and can ensure that we have adequate and effective treatments and networks in place.
The hon. Member for Strangford (Jim Shannon) mentioned research. Yes, in the end, research will help us to find a cure. We spend something like £1 billion a year through the National Institute of Health Research. Of that, the spend on neurology has increased over five years from £30 million—it is not the biggest area—to something like £55 million this year. That is something that we should continue to press for, and I am sure that both the hon. Gentleman and Parkinson’s UK will do that.
I agree with the thrust of what the hon. Gentleman said about the DWP. Indeed, the Government’s Green Paper, which was published in October 2016, talked about removing continuous assessment processes for people with progressive diseases, such as Parkinson’s. I understand that the DWP is working towards developing the criteria for switching off assessments, and I think that he and I would both agree that the sooner that is applied in this case, the better.
In conclusion, early-onset Parkinson’s is a very tough condition that around 5,000 or 6,000 people across the country have. It is tough to diagnose and there is no cure, although it can be partially managed. I congratulate the hon. Member for Torfaen again on raising awareness of the condition, both today and over the past year or so through the campaign. I also thank Parkinson’s UK for the work it does. I hope that this discussion has been helpful. I would be delighted to meet the hon. Gentleman, the hon. Member for Bridgend, Parkinson’s UK and perhaps even my hon. Friend the Member for North Swindon to talk about how we can take this forward.
Question put and agreed to.
Motion made, and Question proposed, That this House do now adjourn.—(Chris Heaton-Harris.)