Young-onset Parkinson’s Disease

David Mowat Excerpts

Monday 6th March 2017 Commons Chamber

[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.

[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.

[Nick Thomas-Symonds]

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.

[David Mowat]

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.

[Nick Thomas-Symonds]

The Minister mentioned psychologists in that list. Does he agree that mental health is a vital part of that package?

[David Mowat]

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.