Presentation made at House of Commonson the implications of the Donaldson Report for research into Parkinson's Disease

Many thanks for those kind words of introduction and let me say at the outset what a pleasure it is to have the opportunity to speak to you this evening and also what a honour it is to be a Member of a Panel with such distinguished fellow speakers.

I want to talk to you this evening about the importance of the Donaldson recommendations and how they represent new hope for people with Parkinson’s Disease in this country. Of course, it is not just conditions such as Parkinson’s which have been identified as likely to benefit from effective treatments arising from the research. Indeed, Professor Donaldson in his report identified a range of conditions which the research into new therapies and treatments could address – these include diabetes, multiple sclerosis, heart conditions, strokes and cancers. There are other conditions which may well fall to stem cell research if Parliament allows the areas of research permitted under the 1990 Act to be extended.

First of all, what is Parkinson’s Disease? The three cardinal symptoms were first identified in 1817 by Dr. James Parkinson. Parkinson’s Disease is a disorder of movement caused by the loss of Dopamine producing cells in the brain. Dopamine is a chemical transmitter which plays an important role in sending signals in the brain regarding movement. The three cardinal symptoms are:

• Tremor
• Stiffness and Rigidity
• Slowness or Poverty of movement

They were identified by James Parkinson in his publication "Essay on the Shaking Palsy" published in 1817. I think it is worth remembering this evening too, meeting here at the Houses of Parliament that as well as being a brilliant doctor James Parkinson had other interests too. He was prominent in the Church and made a major contribution as a geologist. Perhaps most appropriate this evening, however, was his involvement in politics and his membership of the London Corresponding Society through which he pressed for universal suffrage and annual elections. Indeed, it has been suggested that he only moved onwards from his interest in politics when he narrowly escaped being charged with treason regarding a plot to assassinate the King.

And it was sixty years after the publication of his "Essay on the Shaking Palsy" in 1817 that Professor Charcot published a paper which made reference for the first time to "La Maladie de Parkinson" – Parkinson’s Disease.

What is the impact of Parkinson’s Disease?

There are around 120,000 people in the U.K. who are living with Parkinson’s Disease themselves. In addition, however, we need to remember that their partners, their children, and their families are all affected by the impact of this condition and we estimate that something like 1,000,000 people in the U.K. are living with the condition.

Parkinson’s is a condition whose incidence increases with age. Even so, we know that 1 in 7 people with Parkinson’s are diagnosed before the age of 50. The Canadian actor Michael J. Fox is a classic case of someone diagnosed with Parkinson’s at a relatively young age, in his case around the age of 30.

Given the increase in the incidence of Parkinson’s with age, we need to bear in mind that demographic changes already in train in this country will lead to a huge increase in the population of people aged over 60. The Foresight programme sponsored by the DTI has predicted that the number of people in the U.K. over 60 will increase by 53% by the year 2030. Their forecast is that the current number of 12.2 million will increase to 18.7 million by 2030 and this means that there will be an increasing number of people affected by Parkinson’s and other neurological conditions unless we can intervene to develop effective treatments and, indeed, a cure.

Parkinson’s affects all aspects of daily living for the individual and the family living with the condition. Of course, the condition fluctuates within the day and from day to day and it affects no two people in exactly the same way. But we do know that it has a devastating impact on all aspects of daily living and I will share some examples with you:

• As a movement disorder, it can affect a wide range of movements including facial expressions. We speak of the "Parkinsonian mask" when the person with Parkinson’s may have a still facial expression and not smile as easily and readily as they used to do so.
• The tone of voice may change and the person with Parkinson’s may speak more softly and in a monotone. Linking this with the loss of facial expression, you will readily appreciate how close family relationships can be weakened by the impact of just these 2 symptoms of the condition.
• Fatigue can be a real problem yet at the same time there can be difficulties in sleeping with turning over in bed proving very difficult.
• Pain can be a constant problem for many people with Parkinson’s.
• We know from research that some 40% of people living with Parkinson’s experience depression and this is not simply a reaction to having Parkinson’s Disease but is a feature of the condition itself.
• Hand-writing can be affected and the person with Parkinson’s may lose a fine clear hand-writing style and their writing may become small, cramped and spidery.
• It is perhaps not surprising that the post bags of MPs and Peers are not dominated at the present time by letters from people with Parkinson’s – both the difficulties with handwriting and the impact of the condition on their daily life can understandably mean that other concerns have a greater priority at this stage.

Donaldson Recommendations – New Hope

Parkinson’s is a long term degenerative condition. As the loss of dopamine producing cells in the brain continues the symptoms increase in severity and the person with Parkinson’s becomes increasingly disabled.

There is no cure at present and although we know that it is the loss of dopamine producing cells that causes the onset of conditions we do not yet know exactly what causes those cells to die.

We know that for many people drug treatments can be effective in the short term but there are longer term complications from drug therapies. This may include the loss of taste, for example, where the enjoyment of food may be lost and, linked with other aspects of the condition, the person with Parkinson’s may become very reluctant to go out socially for a meal or even to enjoy having friends to dinner at home. Many patients suffer with hallucinations as a side affect of the drugs and these can be extremely frightening and alarming for the patient and the family. For many people, involuntary movements known as dyskinesias can be a disabling side affect of long term drug therapies.

Surgical interventions can offer some relief from symptoms in a relatively small number of cases but there are risks involved with surgery, of course, and the disease continues to progress after the surgical intervention.

It is stem cell research which offers real hope of "Dopamine Loss Reversal" and which may enable the lost dopamine producing cells to be replaced by new healthy cells.

Donaldson Recommendations

Let me therefore leave you with 3 key points from the Parkinson’s Disease Society regarding the Donaldson Recommendations.

• The Society respects the views of those who may have moral or ethical reservations regarding this area of research.
• The Society remains totally opposed to human reproductive cloning – research in this area is of course not permitted at present and we welcome the fact that the Government proposes to reinforce the existing prohibition of human reproductive cloning.
• The Society strongly supports the Donaldson recommendations to extend the areas of research permitted under the 1990 Human Fertilisation and Embryology Act. We believe the areas of research should be extended as recommended by Professor Donaldson and we wish to urge all MPs and Peers to support the recommendations when the regulations are laid before both Houses of Parliament shortly.