Parkinson's News: Autumn 2009

Parkinson’s News for Health and Social Care Professionals

Thousands pledge to donate brains for Parkinson’s research The Parkinson’s Disease Society (PDS) has successfully launched a nationwide appeal to raise awareness about the benefits of brain donation.

The Parkinson’s Brain Donor Appeal encourages more people to pledge to donate their brains and support vital medical research leading towards a cure for Parkinson’s.

After a huge surge of interest, over 2,000 people have registered to leave their brains to Parkinson's research since April. Celebrities including BBC's Newsnight presenter Jeremy Paxman and actress Jane Asher, have also pledged to donate their brains after they die.

"We’ve been delighted at the public’s response – thousands want to support our search for a cure.

“We need more professionals to raise awareness of our Brain Donor Appeal by informing patients, their families and carers, and colleagues.”

Dr Djordje Gveric, Parkinson’s Brain Bank Manager Researchers need the brains of people with and without Parkinson’s to understand what causes the condition. Using this knowledge, they can develop better treatments and ultimately find a cure – a treatment that allows people to live a life free of all symptoms. Donated brains can also be used to advance research into other neurological conditions such as Alzheimer's and multiple sclerosis.

How professionals can help Health and social care professionals can help by raising awareness of our Brain Donor Appeal with patients, their families and carers, and colleagues.

The Society is encouraging everyone to think and talk about brain donation.

If it feels right, people can join the Parkinson’s Brain Donor Register.

New research from YouGov, commissioned by the PDS, has revealed that the general public has a lack of awareness about brain donation. More than a quarter of people have never thought about brain donation and only 7% were comfortable with the idea – compared with more than 60% who said they would be happy to donate their heart or kidney.

There is also a lot of confusion around donor cards. The NHS organ donor card applies for transplants only and does not include an option to donate the brain for medical research.

Anyone wishing to donate their brain for research into Parkinson's, should sign up directly with our Brain Donor Register and carry a Brain Donor card.

Working towards a cure

Issue 32 Autumn 2009

In this issue What’s new Thousands pledge to donate brains for Parkinson’s research PDS marks its 40th anniversary Professionals get involved in Parliamentary Inquiry into Parkinson’s Services PDS launches Fair Care for Parkinson’s PDS launches new Parkinson’s Disease Audit tool PDS champions Carers Week

Northern Ireland news

1 3

7 9 10 11

Help us improve Parkinson’s services 12 Changes in health and social care 13

Scotland news

PDS finds 5,000 ‘missing’ Scots with Parkinson’s

14

More money for deep brain stimulation Neurology services to change

16 16

Wales news

Policy into practice Your health, your way: a guide to long term conditions and self care 17 Employment and Support Allowance (ESA) 18 Welcoming the dementia strategy 19

Supporting professionals PDS Information and Support Workers deliver support for all 20 PDS Helpline supports non-English speakers 21 My training in... Lee Silverman Voice Therapy 22 PDS resources for professionals 23 and people affected by Parkinson’s 24 Parkinson’s disease 2009: PDS annual conference 25

Parkinson’s is a progressive Research update neurological condition that affects Non-Motor Symptoms of around 120,000 people in the UK. Parkinson’s Disease: What’s new 27 Currently incurable, the condition Progress: Advancing Parkinson’s results from the degeneration of nerve Research 28 cells that make dopamine – a key New research publications 30 neurochemical messenger – in the Drug update 38 substantia nigra region of the brain.

1

What’s new The clinical signs of Parkinson’s are evident when around 70% of the dopamine-producing nerve cells are lost. People experience a wide range of motor and non-motor symptoms that change throughout the course of the condition.

Studying human brains is essential for finding a cure for Parkinson’s. Only humans develop Parkinson's – so research needs to be carried out on human tissue. But it is impossible to study the living brain without doing any damage. Also, today's neuro-imaging techniques are limited in what they can tell us. This means that the best way to study nerve cells, and what happens when they die, is to look at the human brain after death.

Research using donated brain tissue has already led to major medical breakthroughs including the original development of levodopa, which has revolutionised how motor symptoms are controlled. Comparing brain tissue from people with and without Parkinson’s, can help researchers pinpoint what causes the condition and work towards a cure and better treatments (Fact box 1).

2

Parkinson’s News

Fact box 1. Key questions being tackled in the search for a cure Understanding the causes l What triggers Parkinson’s? l Why

dopamine-producing nerve cells are more susceptible to the factors that cause Parkinson’s.

l

How the condition progresses.

Finding a cure and better treatments l How to effectively treat the motor and non-motor symptoms of the condition. l How

to reduce the side effects of existing drugs used to treat Parkinson’s.

l

How to stop, slow down or reverse Parkinson’s.

Issue 32 Autumn 2009

What’s new

PDS marks its 40th anniversary This year is the 40th anniversary of the Parkinson’s Disease Society. Looking back, we have achieved a huge amount, thanks to our research, information and support, campaigning and fundraising activities. Today, the Society is committed to finding a cure for Parkinson’s and improving the lives of everyone affected by the condition.

40 years of research achievements Unravelling the causes of Parkinson’s Parkinson’s develops initially as a result of the selective and gradual death of dopamine-producing nerve cells in the substantia nigra – a region of the brain that controls movement. We still don’t fully understand what causes these nerve cells to die but, for most people, it is probably triggered by a combination of several different genetic and environmental factors.

Research supported by the Society has pinpointed defects in mitochondria, mutations in the PINK1 and LRRK2 genes, and oxidative stress as key players that influence nerve cell death.

More than a movement disorder Parkinson’s is a complex condition with a broad range of symptoms that change over time. No two people are affected in the same way. The Society has funded research that has developed new ways of measuring the full range of symptoms, including a person’s physical, emotional and intellectual wellbeing.

Although a person’s movement problems are treated, nonmotor symptoms such as mental health issues, sleeping difficulties, autonomic disorders, and sensory disturbances are often overlooked. These non-motor symptoms can have a major impact on quality of life.

Our Non-motor Symptoms Questionnaire can be completed by people with Parkinson’s prior to the consultation with their GP, consultant or Parkinson’s Disease Nurse Specialist. It helps highlight any non-motor symptoms that require treatment. Our researchers have also redesigned the Unified Parkinson’s Disease Rating Scale to incorporate non-motor symptoms. While our PDQ-39 questionnaire monitors quality of life during clinical trials.

Issue 32 Autumn 2009

Non-motor Symptoms Questionnaire This questionnaire can be filled in by people with Parkinson’s before visiting their GP, consultant or Parkinson’s Disease Nurse Specialist.

Once completed the questionnaire should be given to the healthcare professional to aid their diagnosis of non-motor symptoms.

Order code B117 from Sharward Services (see page 23) Visit www.parkinsons.org.uk/nonmotorquestionnaire to download a copy of the questionnaire

Parkinson’s News

3

What’s new Changing clinical practice At present there are no definitive laboratory tests or readily available imaging tools to make a diagnosis of Parkinson’s.

The NICE Guideline for Parkinson’s recommends that the condition is diagnosed following a detailed clinical examination using the UK PDS Brain Bank Criteria by a neurologist or geriatrician with a special interest in Parkinson’s. The Brain Bank Criteria originated from research supported by the Society. In addition, our research has led to the development of modern brain imaging techniques that are used to exclude other conditions that may have similar symptoms and referred to as ‘Parkinsonism’.

The care and treatment of people with Parkinson’s is complicated as their needs change over time. Our pioneering research has shown that Parkinson’s Disease Nurse Specialists make a significant difference to a person’s ability to cope with the condition. Specialist nurses have revolutionised care by co-ordinating the multidisciplinary team involved in the management of Parkinson’s and bringing care into the community and a person’s home.

Better drug treatments

people’s symptoms. But, as the condition progresses, its effects can change. Long-term treatment can be associated with motor complications such as dyskinesias (involuntary movements) and motor fluctuations (end-of-dose wearing off, unpredictable ‘offs’ and freezing episodes).

Research funded by the Society has found that taking other drugs such as selegiline and apomorphine alongside levodopa can prolong its effects and minimize the side effects. This has benefited hundreds of thousands of people with Parkinson’s around the world.

New hopes for a cure Although current treatments can help relieve most symptoms during the early stages of Parkinson’s, they are not a cure. By ‘cure’ we mean treatment(s) that allow people to live a life free of all symptoms and ultimately slow down, stop or reverse the progression of the condition.

Research funded by the Society has pioneered two of the most promising prospects for a cure – gene therapy and cell transplants. Today, four different gene therapy treatments are being tested in people with Parkinson’s and stem cells are making good progress in animal models.

Almost everyone who has Parkinson’s will take the drug levodopa at some point. Levodopa is effective throughout the course of Parkinson’s and can completely control

Four decades of discovery brochure describes how the Society’s research is making a real difference to the treatment and care of people living with Parkinson’s.

To find out more about our search for a cure, visit www.parkinsons.org.uk/ researchachievements Order code B201 from Sharward Services (see page 23)

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Parkinson’s News

Issue 32 Autumn 2009

What’s new

THE TIME IS

NOW 40 TH Anniversary

The time is now: l to

support clinical research into new and better treatments, and ultimately a cure for Parkinson's

l to

campaign for an additional 150 Parkinson’s Disease Nurse Specialists – so all people with Parkinson’s across the UK have access to an expert nurse

l to

deliver high-quality health and social services by implementing the NICE Guideline for Parkinson’s

To find out more about the PDS:

40 years of supporting people affected by Parkinson’s l The

PDS is the world’s largest membership organisation for people living with Parkinson’s.

Visit:

www.parkinsons.org.uk

Call:

020 7931 8080

Email:

enquiries@parkinsons.org.uk

Helpline: 0808 800 0303 The Helpline is a confidential service for people affected by Parkinson’s, and health and social care professionals. Calls are free from UK land lines and some mobile networks.

l In

40 years, we have supported hundreds of thousands of people affected by Parkinson’s.

l Our

research, campaigning and fundraising activities have built a UK-wide network of around 250 Parkinson's Disease Nurse Specialists.

l We

provide support and information through our Helpline, website, 330 branches and support groups, and 120 Information and Support Workers.

Issue 32 Autumn 2009

Parkinson’s News

5

What’s new

40

years

2009

2004

of progress

“The Parkinson’s Disease Society supports people like me and gives us all hope for a cure in the future.”

Mike Godfrey Sutton, Kingston and Epsom Branch

Two genes associated with inherited Parkinson’s are discovered, giving us a better understanding of the causes of Parkinson’s.

1989

The first Parkinson’s Disease Nurse Specialist is appointed, providing specialised local care for people with Parkinson’s.

1984 The Parkinson’s Brain Bank is established, enabling crucial research into the condition.

1969 Levodopa becomes the first major breakthrough in drug treatment for Parkinson’s, revolutionising how symptoms are controlled.

Our new posters, postcards and leaflet highlight our key achievements in research.

Help raise awareness by displaying these materials within your clinical setting.

Order your free materials, by contacting Sharward services on 01473 212115 or pds@sharward.co.uk, quoting the order codes below.

A4 poster (P073) • A3 poster (P072) • Postcard (B061) • Leaflet (pocket guide) (B062)

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Parkinson’s News

Issue 32 Autumn 2009

What’s new

Inquiry reveals appalling gaps in Parkinson’s care A shocking new report from the All Party Parliamentary Group (APPG) for Parkinson’s Disease has found a postcode lottery in Parkinson’s services across the UK with serious shortfalls in Wales and Northern Ireland.

Doctors, therapists and social care professionals were among the 350 people in Wales, England and Northern Ireland who gave evidence to the Inquiry about the state of Parkinson’s services. The report called Please mind the gap: Parkinson’s disease services today warned that health and social care professionals have a poor understanding of the condition and that there is a shortage of trained professionals. There is also a failure to deliver a ‘joined up’ approach to care.

The APPG is now calling for a review of the health and social care workforce to guarantee there are enough qualified staff. They are also calling for effective monitoring of services, to ensure national guidelines are being met, and the Government to appoint an authority on Parkinson’s to provide leadership.

“The APPG Inquiry report uncovers just how bad services are for so many people with Parkinson’s. This needs to change.

“We want to see effective monitoring of Parkinson’s services to ensure they meet national guidelines, an urgent review of the health and social care workforce, and stronger national and local leadership.”

Steve Ford, Chief Executive of the Parkinson’s Disease Society

All Party Parliamentary Group for Parkinson’s Disease Over 60 MPs and Peers from the main political parties have joined the APPG, and the PDS acts as the Secretariat. The aim of the Group is to raise awareness of Parkinson’s amongst parliamentarians, and influence legislation and policy makers in order to improve the lives of people affected by Parkinson’s.

The APPG Inquiry was carried out in response to growing concerns about variations in access to the comprehensive and expert multidisciplinary care needed by people with Parkinson’s.

Postcode lottery in services Despite the clear standards set out in the National Service Framework for Long-term conditions in England and the NICE Guideline for Parkinson’s, the evidence paints a stark picture of inequalities in access to services for people with Parkinson’s and their carers. The Inquiry identified significant problems including: l poor

access to therapy services, Parkinson’s Disease Nurse Specialists, and deep brain stimulation

l poor

understanding of Parkinson’s among the general health and social care workforce

l a worryingly

low awareness among professionals of the mental health aspects of Parkinson’s and inadequate access to specialist services to help people manage their mental health-related symptoms

l poor

information provision and signposting, especially with regard to social care

l lack

of integrated working between the range of services involved in the different aspects of care for people with Parkinson’s and carers

l limited

access to respite care and other support for carers

l significant

concerns about access to appropriate services for people living in care homes and for black and minority ethnic groups

Key barriers to delivering consistent, high-quality services included: l little

impetus behind implementation of the NICE Guideline and other relevant quality frameworks, with limited monitoring for compliance with quality standards

l shortages

in the number of appropriately trained professionals in key areas of care for people with Parkinson’s

l lack

of understanding about Parkinson’s among the general health and social care workforce

l lack

of leadership for neurological services at national and local level

Issue 32 Autumn 2009

Parkinson’s News

7

What’s new l absence

of integrated service planning and commissioning to reflect the all-round needs of people with Parkinson’s

l lack

of awareness of the cost effectiveness of elements of care for people with Parkinson’s among service planners and commissioners

The NICE Guideline for Parkinson’s recommends that: l people

with suspected Parkinson’s should be referred quickly (within 6 weeks) and untreated to a specialist with expertise in the differential diagnosis of Parkinson's

l to

guarantee effective monitoring of Parkinson’s services to ensure they meet national guidelines and standards

l to

support better commissioning and planning of services for people with Parkinson’s through the provision of evidence and guidance

l to

improve national and local leadership with an authority on Parkinson’s within governments

The APPG plans to mobilise political pressure and make sure these issues are tackled by the Government, NHS and social services.

l the

diagnosis of Parkinson’s should be reviewed regularly (every 6–12 months)

l people

with Parkinson’s should have regular access to the following, which may be provided by a Parkinson’s Disease Nurse Specialist:

n

monitoring and medication adjustment

n

continuing point of contact for support (including a home visits when needed)

n a reliable

source of information about clinical and social matters

l everyone

who needs it should have access to physiotherapy, speech and language therapy, and occupational therapy

l palliative

care should be considered in all phases of the condition and people with Parkinson’s and their carers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals

APPG Inquiry recommendations Poor access to health and social care services has a huge impact on people with Parkinson’s and their carers. It affects their ability to manage Parkinson’s symptoms and their quality of life. If people with Parkinson’s had equal access to the full range of services, they would be less likely to have accidents or need unplanned or lengthy hospital stays. This could potentially save the NHS £3million a year.

The Inquiry strongly urges the UK Government and the devolved administrations in Wales and Northern Ireland to re-prioritise Parkinson’s, and take action on the report’s recommendations: l to

review the health and social care workforce to guarantee that enough skilled staff are in place to deliver high-quality Parkinson’s services

Baroness Gale, Chair of the APPG, signing the pledge card to support the APPG Inquiry report recommendations

What the PDS is doing The Society has launched a new campaign, Fair Care for Parkinson’s in response to the APPG report. Fair Care for Parkinson’s aims to ensure that the report‘s recommendations are carried out and that everyone affected by Parkinson’s receives the care they deserve – regardless of where they live in the UK (see page 9 for more information).

We have also launched the Parkinson’s Disease Audit tool to enable professionals to review the effectiveness of their Parkinson’s services and pinpoint areas for improvement (see page 10 for more information).

For more information on the APPG, contact Emily Cogbill, Parliamentary Officer, at ecogbill@parkinsons.org.uk To download the APPG Inquiry report Please mind the gap: Parkinson’s disease services today, visit www.parkinsons.org.uk/appg

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Parkinson’s News

Issue 32 Autumn 2009

What’s new

PDS launches Fair Care for Parkinson’s The PDS has launched a new campaign, Fair Care for Parkinson’s, based on compelling evidence that too many people affected by Parkinson’s are missing out on key services, depending on where they live.

The report from the All Party Parliamentary Group (APPG) for Parkinson’s Disease Please mind the gap: Parkinson’s disease services today has exposed major inequalities in access to information and services for people with Parkinson’s and their families (see page 7 for more information).

The Society is fighting for a fairer deal for people affected

by Parkinson’s. Our Fair Care for Parkinson’s campaign is calling for all UK governments to ensure that the full range of key services are provided for everyone affected by Parkinson’s, wherever they live in the UK. To find out what Parkinson’s services should look like, visit www.parkinsons.org.uk/parkinsonsservices

“I had to wait six months to see a specialist for my initial diagnosis, but received no information about Parkinson’s at that or any subsequent appointment. At one stage, my neurologist went on sick leave for more than a year, with no notification or replacement service. The impact on me was one of uncertainty. I was left not knowing whether I needed more or different medication, and the only information I got was from the Parkinson’s Disease Society.

“From what I can see, the resources for Parkinson’s are dismal. When I was diagnosed with diabetes, I saw the dietician, health visitor, podiatrist and specialist nurse on that same day. I was invited to go to an education class, which ran over several weeks and I am reviewed every six months.

“With Parkinson’s, I wasn’t seen until 14 months after diagnosis, and my subsequent review was two years later.”

Jim Henry, comparing his treatment for Parkinson’s with his diabetes care

How professionals can get involved Health and social care professionals working with people with Parkinson’s and their carers should: l provide

information on how to access all relevant services and sign post people affected by Parkinson’s to information produced by the Society. See page 23 or visit www.parkinsons.org.uk/publications

l utilise

the information produced by the Society for professionals. Visit www.parkinsons.org.uk/professionals

l apply

for educational bursaries and educational opportunities available through the Society. See page 25 or visit www.parkinsons.org.uk/training

• participate in the Parkinson’s Disease Audit to review the effectiveness of their Parkinson’s service and pinpoint areas for improvement. See page 10 or visit www.parkinsons.org.uk/audit Clear standards for Parkinson’s services are already in place across England, Wales and Northern Ireland and will be introduced in Scotland by Autumn 2009. However, these are not being applied consistently across the country and many people do not get the services they should expect. Through Fair Care for Parkinson’s the Society is campaigning for: l strong

national and local leadership for Parkinson’s and other neurology services

l enough

skilled health and social care staff in place to provide the full range of appropriate care

l effective

monitoring of Parkinson’s services in all areas of the UK to ensure they meet national guidelines and standards

l a review

of the implementation of existing standards, including a 5-year review of the National Service Framework for Long-term conditions in England

To find out more about Fair Care for Parkinson’s email Dave Clark, Social Policy and Campaigns Officer or Helen Kirrane, Health Policy and Campaigns Officer at campaigns@parkinsons.org.uk You can also visit www.parkinsons.org.uk/faircare

Issue 32 Autumn 2009

Parkinson’s News

9

What’s new

PDS launches new Parkinson’s Disease Audit tool The Parkinson’s Disease Society, in collaboration with multidisciplinary health professional bodies, has developed a new audit tool.

The Parkinson’s Disease (PD) Audit enables professionals around the UK to review the effectiveness of their Parkinson’s services and pinpoint areas for improvement.

The first National Institute of Health and Clinical Excellence (NICE) Guideline for Parkinson’s, applicable in England, Wales and Northern Ireland, was published three years ago.

The PD Audit tool assists local clinical centres audit their service against national standards of good practice. Results from PD Audit will help clinicians benchmark their practice against other organisations and improve services for people with Parkinson’s and their carers.

Last year, a trial audit was conducted with 18 collaborating centres in England. Feedback from the participants was extremely positive. Many clinicians have now incorporated the findings in the planning of future services at a local level.

“The Society is an enthusiastic supporter of the NICE Guideline for Parkinson’s – it has been an impetus for developing services and clinical practice in many areas. However, our Members’ Survey revealed the variable experiences in accessing Parkinson’s services. So one of our key priorities is to see the delivery of high-quality health and social care services across the UK. “The Society is committed to working in partnership with clinical staff to improve services. Our Parkinson’s Disease Audit tool highlights the strengths and areas of weaknesses of your current service and enables you to put in place an action plan for improvement. Local patients will be reassured to know that you are reviewing your service in such a systematic way.”

Steve Ford, Chief Executive of the Parkinson’s Disease Society

What is audited?

The PD Audit focuses on criteria which link to the NICE key priorities for implementation but also reflects the Quality Standards outlined in the National Service Framework (NSF) for Long-term conditions.

10 Parkinson’s News

The Parkinson’s Disease Audit tool: l compares

your local Parkinson’s service against the NICE Audit Criteria

l benchmarks

the performance of your service against other Parkinson’s services across the UK

The Audit consists of two parts: l a ‘Service

Description Audit’ that examines patient access to NICE recommended services and treatments

l a ‘New

Patient Audit’ that looks at the standards relating to the first clinic visit by people referred with the query “is this Parkinson’s disease?”

Key audit components include: l patient

referral times from GP

l medication l initial

prior to referral

assessment

l accurate l access

diagnosis

to allied health professionals and nurse specialists

l information

provision

How will benchmarking work?

The Society will combine your data with that of the other collaborating centres. All participants will then receive an individualised report detailing how your service compares with other anonymous centres and the national standards.

Benchmarking will operate under strict processes of confidentiality. The data will be held securely by the Society and will not be released without the prior consent of the audit centre.

The Parkinson’s Disease Audit tool can be downloaded from www.parkinsons.org.uk/audit Clinical centres should register and send their data to the Parkinson’s Disease Society for analysis and benchmarking by 30 November 2009.

Issue 32 Autumn 2009

What’s new

PDS champions Carers Week The Parkinson’s Disease Society partnered nine other national charities to celebrate and support Carers Week 2009, which ran from 8–14 June. The Week played a crucial part in raising awareness for people who provide unpaid care for the 120,000 people with Parkinson’s in the UK. This year’s theme was ‘Carers … the UK’s secret service’ to emphasise the lack of recognition carers often face in all areas of their lives from health and social care professionals, employers and even friends and family.

The Carers Week National Survey revealed that: l 87%

of carers felt that their role had been overlooked by professionals

l 93%

said that being overlooked had made their life harder

l 74%

said that they had reached breaking point

Support from professionals can make a massive difference to carer’s lives. Health and social care professionals can help by: l recognising

the essential support carers provide to people with Parkinson’s

l understanding

that it is not just the person with Parkinson’s who needs information and advice about the condition

l understanding

the impact of caring on the carers’ own health – making sure that they are getting support now, rather than waiting until they reach breaking point

l making

sure carers are aware of the benefits, health and social care support that might be available

l

treating carers with respect

If you are in contact with carers of people with Parkinson’s, make sure that they know they are entitled to a carer’s assessment and how to access support.

“Speaking out for carers is a growing part of the Society’s work. It is completely unacceptable that two in three carers of people with Parkinson’s are unaware of their right to a carers’ assessment.

Issue 32 Autumn 2009

“The Society will continue to campaign for greater recognition and support for this hidden army, and help them find the services and benefits they are entitled to.”

Steve Ford, Chief Executive of the Parkinson’s Disease Society

Visit www.carersweek.org for more about the Carers Week National Survey.

Resources for carers from the PDS Information, advice and courses for carers can be found at www.parkinsons.org.uk/ carers

The Carer’s Guide Order code B071 from Sharward Services (see page 23)

Parkinson’s News 11

Northern Ireland news

Help us improve Parkinson’s services In May, the Parkinson’s Disease Society organised an event themed around improving services for people living with Parkinson’s in Northern Ireland.

Over 50 health and social care professionals were brought together in Antrim for the event. The audience was welcomed by Dr David Craig, Consultant Geriatrician at Belfast City Hospital, who talked about current services being provided to people with Parkinson’s and emphasised the urgency in developing the country’s Parkinson’s services in a multidisciplinary and regional manner.

Next, Brendan Johnston, Chief Executive of the Northern Ireland Social Care Council talked about the importance of the quality of training for social care staff. The Council has been established to increase public protection by improving and regulating standards of training and practice for social care workers. He was enthusiastic about attendance at the event and opportunities available to improve services for people with Parkinson’s.

Finally, the new Chief Executive of the Health and Social Care Board, John Compton, introduced the Board’s role in commissioning, resource management and performance management and improvement. John Compton publicly announced his intention to meet with and discuss how to work in partnership with the Society to improve services for people living with Parkinson’s.

After the presentations, the roundtable discussions focused on three themes: l What

are the main threats and opportunities facing services for people with Parkinson’s in Northern Ireland?

l What

would make the biggest difference to services?

l What

can the Society do at a national and local level to support clinicians and commissioners to improve local services?

Key messages that came out of the discussion groups included: l profiling

the existing specialist nurse provision and increase nurse posts

12 Parkinson’s News

l implementing l adopting

the NICE Guideline for Parkinson’s

the National Service Framework for Northern

Ireland l identifying

a national clinical lead

l continuing

collaborative working with professionals in Northern Ireland

l awareness

raising and education of both professionals and care givers in the management of Parkinson’s

The Society is now working in collaboration with health and social care professionals to address these issues both locally and nationally.

If you are interested in improving services for people with Parkinson’s in Northern Ireland, contact Nicola Moore, Northern Ireland Manager at nmoore@parkinsons.org.uk

Issue 32 Autumn 2009

Northern Ireland news

Changes in health and social care The Parkinson’s Disease Society welcomes the health and social care reforms that have come into effect in Northern Ireland. The changes have created a new streamlined health and social care system to improve public health and tackle health inequalities.

The restructured health and social care system has established: l a Health

and Social Care Board

l a Public

Health Agency

l a Business l a Patient

Services Organisation

and Client Council

These structural changes mark the second phase of reform within health and social care. In 2007, five new integrated Health and Social Care Trusts were created to replace 18 previous Trusts. The Ambulance Service remained unchanged.

“We urgently need better co-ordination of health and social care services and these reforms are a step in the right direction.

It is unacceptable that peoples’ health and life expectancy are determined by where they live.

“The Society is campaigning hard to tackle the inequalities in access to services for the 3,500 people with Parkinson’s in Northern Ireland.”

Nicola Moore, Northern Ireland Manager of the Parkinson’s Disease Society

Poor deal for people with Parkinson’s People with Parkinson’s and their carers depend on a multidisciplinary team of health and social care professionals working together to maximise their quality of life and symptom-control. The results of the Society’s Members’ Survey – the largest ever in people with Parkinson’s and their carers in the UK – revealed major inequalities in healthcare services.

Access to specialist nurses 25% of people with Parkinson’s in Northern Ireland have never talked to a Parkinson’s Disease Nurse Specialist.

This is despite specialist nurses being recommended by NICE and people with Parkinson’s repeatedly saying they are central in supporting the management of their condition.

Medication review

Nearly

30% of people with Parkinson’s have not had their medication reviewed at least once a year – as recommended by NICE. As Parkinson’s is a complex progressive condition, it is crucial that people’s medication regimes are regularly reviewed. The Society is concerned that the frequency of medication reviews is worse in Northern Ireland compared to Scotland, England and Wales.

The Society wants to address these issues. We are campaigning for everyone living with Parkinson’s in Northern Ireland to have access to a specialist nurse and a Parkinson’s specialist to review their medication every 6-12 months.

Subscribe to Parkinson’s News email alerts Subscribe to receive an email alert when the latest edition of Parkinson’s News is available to download online.

Call:

020 7963 9313 or 020 7931 8080

Email: research@parkinsons.org.uk Visit: www.parkinsons.org.uk/parkinsonsnews

Issue 32 Autumn 2009

Parkinson’s News 13

Scotland news

PDS finds 5,000 ‘missing’ Scots with Parkinson’s The Parkinson’s Disease Society has won official recognition that 10,000 people with Parkinson’s are living in Scotland. This figure is double the original estimate of the Scottish Government.

The NHS Clinical Standards for Neurological Health Services in Scotland highlights the need for the Health Service to do better. An investigation by the Society shows how a lack of awareness about Parkinson’s care among officials led to a serious underestimate of the number of people affected by the condition, and could help to explain the long-standing under-funding of Parkinson’s services.

All health and social professionals in Scotland need to raise their awareness of Parkinson’s so that they can provide an improved service.

Following intensive lobbying from the Society and Kenneth Gibson MSP, the Scottish Government has agreed that around 10,000 people have Parkinson’s. This is 5,000 more people than initially stated in a Parliamentary Answer. The Health Minister, Shona Robison, announced the revised figure during the Scottish Parliament’s first ever debate on Parkinson’s.

Our campaign success Our investigation into the reasons for the underestimate demonstrated serious misunderstandings about how Parkinson’s should be managed. Crucially, it became clear that officials were unaware that care should be delivered through specialist Parkinson’s services, rather than by GPs. These misunderstandings meant that the wrong data was being used to estimate prevalence.

If the estimate of 4,800 people had gone unchallenged, it would have undermined the Society’s campaigning work.

It could ultimately have reduced the resources allocated to support people with Parkinson’s, with potentially disastrous impacts on already over stretched services.

14 Parkinson’s News

Above: The Society lobbies the Scottish Parliament before the Ministerial announcement on numbers of Scots affected by Parkinson’s

The original Scottish Government estimate “To ask the Scottish Executive how many patients suffered from idiopathic Parkinson’s disease in the last year for which figures are available, broken down by NHS board.”

Kenneth Gibson (Cunninghame North SNP) “The exact number of people diagnosed with idiopathic Parkinson’s disease in Scotland is not available centrally.

“An estimate, based on the numbers consulting a member of their practice team for the conditions in practices participating in Practice Team Information (PTI) suggests there may be 4,800 people with idiopathic Parkinson’s disease in Scotland. Estimates cannot be provided at NHS board level, as the PTI practice sample is not representative at board level.”

Answered by Shona Robison, Health Minister

As a result of our campaign, the Society has forged new relationships within the Scottish Government and NHS. We look forward to working together to ensure that Parkinson’s is better understood by policy makers in the future.

Issue 32 Autumn 2009

Scotland news Correcting the Government’s figure The Government’s estimate was based on a count of individuals visiting their GP about their Parkinson’s in any given year. But this information, collected under the Patient Team Information (PTI) scheme, does not match prevalence.

Difference between estimated prevalence and PTI data for selected conditions Condition

Estimated prevalence

Numbers Prevalence consulting captured (PTI data) by PTI (%)

Dementia

59,000 – 66,0001

18,1502

31% – 27.5%

Parkinson’s 10,200

4,8003

40%

10,5004

5,4005

51%

The estimate missed:

Multiple Sclerosis

l those

Epilepsy

40,0006

28,6007

72%

In fact, the use of PTI data showed serious misunderstandings about Parkinson’s. It leaves out many of those receiving the best care and – at the other end of the spectrum – misses those whose Parkinson’s is inadequately managed or not recognised.

who only see their consultant and/or Parkinson’s Disease Nurse Specialist about their Parkinson’s

l those

who are under-managed by their GP and only receive repeat prescriptions, or who present with nonmotor symptoms that are not recognised and recorded as being Parkinson’s symptoms

l those

who have not received a diagnosis of Parkinson’s – that accounts for about 20% of the total

PTI data also significantly under-estimates prevalence in other long-term conditions including epilepsy, multiple sclerosis and dementia. However, the Government has not published prevalence estimates based on PTI for these conditions.

Alzheimer Scotland www.alzscot.org/pages/statistics.htm 2 Information Services Division (ISD) www.isdscotland.org/isd/1044.html (2006-7 figures) 3 S3W-10033 4 MS Society www.mssocietyscotland.org.uk/ what_is_ms/index.html 5 ISD www.isdscotland.org/isd/1044.html (2006-7 figures) 6 Epilepsy Scotland www.epilepsyscotland.org.uk/ assets/pdf/information/factsheet/seizures.pdf 7 ISD www.isdscotland.org/isd/1044.html (2006-7 figures) 1

Parkinson’s Disease Nurse Specialist, Lisa Brown, and Judith Bancroft

Issue 32 Autumn 2009

Parkinson’s News 15

Wales news

More money for deep brain stimulation Health Commission Wales has confirmed that £400,000 of NHS funding will be available for deep brain stimulation (DBS) during 2009/10.

Last year the Parkinson’s Disease Society achieved a major campaigning success in getting NHS funding for DBS reinstated in Wales. DBS is a neurosurgical treatment in which specific parts of the brain are stimulated with electrical signals from a pacemaker-like device implanted in the chest.

The treatment makes a significant difference to the lives of people with Parkinson’s whose symptoms are no longer controlled by medication and meet the defined clinical criteria.

Although the Society welcomes the additional funding, we believe that it is not enough to cover the costs of everyone who could benefit from DBS in a given year. On the basis of last year’s DBS statistics, £400,000 will only support around 50% of people with Parkinson’s who would be eligible for the treatment.

The future provision and funding of neurosurgery services for patients living in Wales is currently being considered as part of the implementation of the Neurosciences Review and an ongoing Welsh Assembly Government consultation.

The Society is working alongside other neurological charities to influence Government and ensure that DBS is available to everyone who would benefit.

For more information, email Carol Smith, Campaigns, Influence and Service Development Officer in Wales at csmith@parkinsons.org.uk

Neurology services to change Recommendations from a major new report are being used to plan and deliver better services for people living with neurological conditions across Wales.

The Welsh Adult Neurosciences Expert Review Group was commissioned by the National Assembly for Wales and looked at the standard of adult neuroscience services across the country. A range of experts including Simon Hatch, Wales Manager of the PDS, in addition to the Wales Neurological Alliance (which the Society is a member of) provided valuable input into the review.

Service recommendations The Group published their findings last September, which highlighted the need to improve access to all neuroscience services – in particular to neurology. Three recommendation reports have been produced that cover North Wales, Mid and South Wales and all of Wales. They include the establishment of: l managed

clinical networks in North Wales and for Mid and South Wales

l four

neurology services in Cardiff, Newport, Swansea and Carmarthen, all with in-patient capability

l a North

Wales neurology service, though in-patients will continue to be managed at the Walton Centre in Liverpool

l evidence-based

care pathways for long-term neurological

conditions

16 Parkinson’s News

Workforce recommendations There will also be a significant enhancement of the neurological workforce across Wales. The service recommendations specify that: l nurse

specialists should support the medical workforce with a defined case load of no more than 300 patients in Parkinson’s, epilepsy, multiple sclerosis or neuromuscular disease

l specialist

clinics consisting of multidisciplinary teams should be established to assist in the management of the complex aspects of the more common neurological conditions (which includes Parkinson’s) as close to the patient’s home as is feasible

Moving forward Two implementation planning groups have now been formed, one for North Wales and one for Mid & South Wales, to take forward the recommendations. In addition, a working group under the Neuroscience Expert Group, with local clinical input, has been set up to develop care pathways for Long-term conditions.

The Society welcomes the findings including the recommendation emphasising the importance of Parkinson’s Disease Nurse Specialists and the need for a caseload of no more than 300 patients. We will continue to play a proactive role as the Expert Group is being retained to advise Edwina Hart, Minister for Health and Social Services and the implementation planning groups.

Issue 32 Autumn 2009

Policy into practice

Your health, your way: a guide to long term conditions and self care Last year the Department of Health launched Your health, your way for people with long term conditions.

The Guide, initially published on the NHS Choices website, provides information to help people make informed choices about managing their own care in partnership with health and social care professionals.

Self care is about people taking responsibility for their own health and well-being, including the day-to-day management of their condition. The central focus of Your health, your way is to promote discussion between health and social care professionals and individuals with long term conditions about the possible options for self care and what support and information is available. Linked to Your health, your way is the Government’s commitment that, by 2010, everyone with a long term condition will be offered a personalised care plan.

“Parkinson’s Disease Nurse Specialists will probably be the professional best placed to deliver personalised care plans for people affected by Parkinson’s.

“The Society is keen to give specialist nurses the opportunity to explore what personalised care means to them and share existing good practice.”

Lesley Carter, Head of Influence and Service Development of the Parkinson’s Disease Society The Department of Health (DH) do not want Your health, your way to become top heavy with paperwork and emphasise that the level of planning should be proportional to the condition. Although the finalised documentation has not been published, the Parkinson’s Disease Society believes that the impact of the initiative should be explored.

We have therefore made developing personalised care plans the topic for our workshops that run in conjunction with the Healthy Alliance regional forums for Parkinson’s Disease Nurse Specialists. Healthy Alliance is a collaboration between the Society and GlaxoSmithKline, which provides a dedicated package of support and training for specialist nurses across the UK.

“The personalised care plan workshop was excellent. It gave me the chance to discuss the importance of ensuring a flexible and responsive approach when planning for such a complex condition.”

Una Brenchay, Parkinson’s Disease Nurse Specialist from Newcastle General Hospital Issue 32 Autumn 2009

The Society helped support the development of the core elements of Your health, your way. The Guide identifies five key areas of self care l Information

about their condition and local services.

l Skills

and knowledge training such as expert patient programmes.

l Tools

and self-monitoring devices that can help people manage their condition.

l Health

lifestyle choices such as stop smoking and physical activity.

l Support

for networks such as community and voluntary sector groups.

An information booklet for professionals on Your health, your way is available from www.dh.gov.uk/en/Healthcare/ Longtermconditions/yourhealth To find out more about Healthy Alliance, email Juliet Ashton, Parkinson’s Nurse Adviser at juliet.z.ashton@gsk.com Tina Walker, a person with Parkinson’s who is using the support available in Your health, your way is featured on the NHS Choices website www.nhs.uk/yourhealth Parkinson’s News 17

Policy into practice

Employment and Support Allowance (ESA) From October last year, a new benefit called Employment and Support Allowance (ESA) replaced Incapacity Benefit and Income Support. This affects new claimants in the UK who are under state pension age, who have a limited ability to work because of their condition.

Many people with Parkinson’s will need to obtain medical certificates, information, and letters to support their claim. GPs, Parkinson’s Disease Nurse Specialists and other healthcare professionals should provide as much information as possible, including full details of all symptoms, and fluctuations, for all health issues.

Income Support and Incapacity Benefit will continue for existing claimants. The Department for Work and Pensions (DWP) will transfer them to ESA eventually. The introduction of ESA does not affect Disability Living Allowance and Attendance Allowance benefits.

How professionals can help the claimant Professionals can support the claimant in obtaining a medical certificate and assist them contacting Jobcentre Plus on 0800 055 6688. People with speech or hearing difficulties can call textphone on 0800 023 4888. If someone needs an interpreter or a representative, then the claim can be made by completing a printed form, or in person at a Jobcentre.

The claimant will receive a letter to confirm the details of the claim and a form asking for more information about their health issues. An initial decision on entitlement should be made when the claimant replies, and then ESA payments should start.

Work Capability Assessment Following the initial decision, some people with Parkinson’s might have to attend a Work Capability Assessment meeting (WCA). This is where a nurse or doctor employed by the DWP spends about 75 minutes discussing how their condition affects their ability to work and carry out everyday activities. There will be an emphasis on what the person can do, rather than what they cannot do.

Anyone identified at the outset by the Jobcentre Plus as having a limited capacity for work-related activity, or who has a terminal illness, will be told that they do not have to attend a WCA meeting.

What happens after the Work Capability Assessment?

If ESA is to continue in payment, then the claimant will be told whether they are in the ‘Work-Related Activity Group’ or

18 Parkinson’s News

the ‘Support Group’ of ESA from the start of the 14th week of their claim.

If the DWP stops ESA, then an immediate claim for Jobseekers Allowance may be one of the next steps. But it is important that the claimant seeks benefits advice, such as the Society’s Helpline, without delay.

What are the groups?

People in the Work-Related Activity Group are expected to prepare for work. At the first work-focused interview a package of support for returning to work will be discussed.

The personal adviser will discuss suitable types of work, training, or condition-management support. Usually there will be one further work-focused interview per month in each of the following five months.

Some ESA claimants will be allocated to the Support Group due to ‘severe limitation of functional ability.’ Claimants in the Support Group receive a higher rate of ESA, and are not obliged to undertake work-related activity.

Benefit resources from the PDS Helpline Contact Stephen O’Brien, Advisery Services Officer, Benefits and Employment.

Call: 0808 800 0303 Email: enquiries@parkinsons.org.uk The Helpline is a confidential service for people affected by Parkinson’s, and health and social care professionals. Calls are free from UK land lines and some mobile networks.

Information Sheets Visit www.parkinsons.org.uk/publications to download these free resources or order from Sharward Services (see page 23).

Order code Attendance Allowance WB02 Disability Living Allowance WB03 Employment and Support Allowance WB16 Income Support WB07 Incapacity Benefit WB06

Issue 32 Autumn 2009

Policy into practice

Welcoming the dementia strategy In February 2009, the Department of Health launched the first ever National Dementia Strategy for England.

The Parkinson’s Disease Society was successful in influencing the Strategy to recognise people with Parkinson’s Disease Dementia.

What is the National Dementia Strategy?

The Strategy is the Government’s plan which explains what needs to happen to radically transform the quality of life for people with dementia and their carers in the next five years.

The Society was involved in the initial consultation, making certain that the needs of people living with Parkinson’s Disease Dementia (PDD) were not overlooked. Over the last year, we have successfully campaigned to raise the profile of PDD, as it was not mentioned in the draft Strategy. PDD is now referenced as a specific dementia sub-type, along with an explanation about the difficulty of diagnosis and guidance on the importance of mental health professionals being part of the multidisciplinary care team.

Our response to the Strategy is generally positive. We are pleased that the Government is finally putting the money and resources into making dementia a national priority.

The Strategy’s recommendations are focused on three main themes: raising awareness and understanding, early diagnosis, and support and living well with dementia.

Specific recommendations include:

While Parkinson’s is a very individual condition, the motor symptoms are well documented – tremor, rigidity, slowness of movement, lack of facial expression. However, the nonmotor symptoms such as sleep disorders and mental health problems can be harder to spot. What’s more, they can cause the most deterioration in quality of life.

What needs to happen now?

The challenge is how well the Strategy will be translated into action on the ground. There is new money, plus a mention in the NHS Operating Framework, which will help ensure dementia is on the PCT/Trust agendas for a few years. The key issue for us will be ensuring that people with PDD get their share of the benefits with this new investment.

The Society will continue to campaign hard for people with PDD. We anticipate a place at the dementia research summit that the Government will hold in the near future.

We are also investing £1.2million in a five year dementia research project making us one of the largest funders of dementia research in the UK.

l increasing

public and professional awareness, and developing a better informed and effective workforce

l good

quality diagnosis and intervention for all – particularly GP awareness

l local

dementia adviser services that can provide a point of contact for all those with dementia and their carers

l improved

community care, intermediate care and end-of-

life care l improved

care in hospitals with a senior clinician to be named as the lead for dementia quality improvement

l better

dementia care in care homes

l a clearer

picture of dementia research – starting with a ‘research summit’ that will examine the existing research base and identify any gaps

What’s special about Parkinson’s Disease Dementia?

There are around 120,000 people with Parkinson’s in the UK, and one in three people with Parkinson’s also have some form of PDD. One of the problems in providing the right kind of care for people with PDD is being able to diagnose it properly in the first place.

Issue 32 Autumn 2009

Mental health resources from the PDS Training for professionals Visit www.parkinsons.org.uk/training to find out details of training courses and individuals with specialist knowledge.

Information Sheets Visit www.parkinsons.org.uk/publications to download these free resources or order from Sharward Services (see page 23).

Anxiety Hallucinations Mild Memory Problems Compulsive Behaviour Gambling Hypersexuality Dementia and Parkinson’s Dementia with Lewy Bodies Depression

Order code FS96 FS11 FS95 FS77 FS84 FS87 FS58 FS33 FS56

Parkinson’s News 19

Supporting professionals

PDS Information and Support Workers deliver support for all The Parkinson’s Disease Society has introduced a UK-wide network of Information and Support Workers to increase support for people with Parkinson’s. We are now calling on health and social care professionals to help us ensure that people affected by the condition know about their local PDS information and support service.

Now numbering 120, our Information and Support Workers (ISWs) provide one-to-one information, advice and advocacy to people with Parkinson’s, their families and carers. So far, the expanded ISW service has proved an invaluable resource – reaching people who previously didn’t have access to such local support and advice.

“We want professionals to routinely refer patients, families and carers to their local PDS Information and Support Worker (ISW).

“By telling people about our ISW service, we can ensure that everyone with Parkinson’s is supported – regardless of where they live in the UK.” Steve Ford, Chief Executive of the Parkinson’s Disease Society

One-to-one support The ISWs are an essential link between people affected by Parkinson’s and local health and social care services. Part of their role is to build relationships with professionals and become part of local multidisciplinary teams. By doing this, ISWs can support professionals who acknowledge that their patients require non-medical advice or assessments but they do not have the time or contacts to follow up. The ISW service includes: l signposting

to other PDS services such as our Helpline, website, information resources, and 330 local branches and support groups

l helping

someone who has had to give up work find out what benefits they can receive

l offering

a supporting voice if someone is having problems getting their needs assessed

l directing

people to the appropriate services if they are having difficulties getting around in their home

l facilitating

carers to access services such as respite care

Support for all People living with Parkinson’s need support and information to manage their condition effectively and enjoy independent and productive lives. But in addition to medical support, people require up-to-date information, help navigating through complex local services and emotional support to cope with the more challenging times.

20 Parkinson’s News

ISWs help people with Parkinson’s and their carers by: l giving

accurate information and non-medical advice on Parkinson’s

l finding

information on local health and social services and how to access them

l providing l advising

emotional support

on welfare benefits and how to claim them

l providing

advocacy with service complaints and statutory assessments

The need for information was highlighted in the Society’s recent Members’ Survey, which is the largest ever study in the UK of people with Parkinson’s and their carers. The survey revealed around 50% of people with Parkinson’s wanted more information about their condition. Since Parkinson’s is an individual and fluctuating condition, information and support from ISWs is essential for people throughout the course of their condition.

How ISWs work with professionals “I attend local Parkinson’s Disease Nurse Specialist clinics where I support the nurses by answering questions about benefits or access to other services outside the medical profession.”

Pat Lower, PDS Information and Support Worker in Nottinghamshire Issue 32 Autumn 2009

Supporting professionals Pat Lower is an ISW working in North Leicestershire and Rushcliffe in Nottinghamshire. She works with professionals to raise awareness of Parkinson’s and the service she offers.

Pat has built strong relationships with local Parkinson’s Disease Nurse Specialists and social services.

“My background is in social services – so I understand the way the assessments take place. I’ve been going around all the adult social care teams in my area to talk about the PDS and what we can offer. By exchanging information, we’re both better informed about each other.”

Pat Lower, PDS Information and Support Worker in Nottinghamshire

PDS Helpline supports non-English speakers

In a lot of cases, people with Parkinson’s and their carers (who are often family members) are unaware that they are entitled to certain services. Pat recently helped a couple; one of whom has Parkinson’s, the other their partner and carer. Neither thought social services was something they could access, despite being in need of support. Pat persuaded them to let her contact social services, and while sitting in on an assessment meeting, she was able to explain the day-to-day effect of the condition. The assessor was then able to take the couple’s needs into full consideration.

Find your local PDS Information and Support service – turn to the back page of Parkinson’s News

The Parkinson’s Disease Society’s Helpline now offers information and advice to people in the UK whose first language isn’t English. Our Helpline is a free and confidential service that uses a telephone interpreting service to translate over 170 different languages.

Supporting the work of professionals We provide clear and balanced information to support the practical, emotional, and financial needs of people living with Parkinson’s.

Our multidisciplinary team of trained and experienced advisers offer accurate and up-to-date information on: l the

management of Parkinson’s

l welfare l health

and social care

l access

The Parkinson’s Disease Society Helpline provides confidential advice, information and support from qualified nurses and advisers.

benefits

to services

Clients can call our Helpline directly and request an interpreter. Professionals can also contact us, with their client’s consent, and arrange for a Helpline adviser and interpreter to call your client.

Monday–Friday, 9.30am–9pm Saturday, 9.30am–5.30pm (except Bank Holidays) Email: enquiries@parkinsons.org.uk

Issue 32 Autumn 2009

Parkinson’s News 21

Supporting professionals © moodboard fotolia.com

My training in...

Lee Silverman Voice Therapy Last November, four speech and language therapists from Sheffield participated in a two-day training course on Lee Silverman Voice Therapy (LSVT). Three of the therapists were funded by the Parkinson’s Disease Society educational bursary scheme. Therapist Janet Walmsley describes her training experience.

Many people with Parkinson’s think they are being heard clearly when they speak, but in reality, they can hardly be heard at all. LSVT is a programme developed in the USA to improve speech and voice. Inspired by Mrs Lee Silverman who had Parkinson’s, LSVT helps people with low voice volume and reduced speech intelligibility to achieve a louder voice. The motto of LSVT is: ‘Think LOUD!’ The training course was delivered by two expert LSVT practitioners from the USA. They gave us background and outcomes from research on the first day, and step-by-step practical guidance on the second. We were fortunate to try our new skills on volunteers with Parkinson’s and their carers, who acted the part of having the condition. This showed us how effective the programme can be in a very short time.

LSVT is based on a large body of evidence that shows it works for most people with Parkinson’s. Research into other conditions is being undertaken but the current evidence is less robust. The evidence shows that LSVT can potentially be cost effective for our service. Although the initial programme offered to a client is intensive, it pays dividends because people rarely need much follow-up.

The programme consists of almost daily individual therapy – one hour a day, four days a week for four weeks – with clients practicing daily at home. It starts with a series of exercises to achieve a loud, good quality voice on a single sound. This rapidly moves to speaking practice on everyday words/phrases to achieve carry-over into daily life. This enables clients to see the benefits immediately and maintain their commitment to the programme.

Our challenges LSVT involves a sizeable commitment from both the client and therapist. We are committed and enthusiastic about offering this therapy to our clients with Parkinson’s. While we are running a LSVT programme, it will at least initially, have an impact on our service and what we can offer other clients. As we all work part-time, we are also looking at creative ways to offer the programme around our own timetables.

22 Parkinson’s News

Another interesting challenge lies in the nature of the programme. It is far more directive than most therapists tend to be in the course of our work. In LSVT, we are required to direct the client to focus only on the task in hand for the full hour. There is no room for discussing other issues that may be emerging for the client and which we would normally give time for. The programme also requires us to give very direct feedback where the client is not achieving a loud enough voice, with direct challenges to ‘do better’ and ‘be louder’. We are excited by this approach as the training has shown us that it works. But we are also aware that we need to actively modify our usual styles.

Our plan This year we plan to run a pilot with four therapists working together to deliver the programme to two clients with Parkinson’s. We hope to learn from the experiences of the Chorley Speech and Language Therapy department, who are now running a rolling LSVT programme.

Once we have evaluated our outcomes, we aim to offer LSVT to more clients. We also want to extend the programme to clients with other neurological conditions such as multiple sclerosis and multiple system atrophy.

Participating in the training course has given us the opportunity to expand our skills and re-think our ways of working. We can now start to offer a very effective programme of voice therapy to people with Parkinson’s.

Want to develop your clinical expertise?

The Parkinson’s Disease Society offers educational bursaries to support the ongoing training of professionals working with people with Parkinson’s.

Applicants should have the support of their manager and demonstrate how their attendance will enhance their Parkinson’s service.

For more details, email Daiga Heisters, National Education Adviser at professionals@parkinsons.org.uk

Issue 32 Autumn 2009

Supporting professionals

PDS resources for professionals The Parkinson’s Disease Society produces a range of information resources for professionals involved in the care of people with Parkinson’s. They include the following:

The Professional’s Guide to Parkinson’s Disease

The Professional’s Guide to Parkinson’s Disease

dietician GP nurse occupational therapist pharmacist physiotherapist

CO37554

social worker

0303 k

speech and language therapist

The Professional’s Guide to Parkinson’s Disease This Guide recommends best practice for health and social care professionals working with people with Parkinson’s.

Written and peer reviewed by experts in the relevant fields, it includes sections for dietitians, GPs, nurses, occupational therapists, pharmacists, physiotherapists, social workers, and speech and languages therapists.

Order code B126 When Your Patient has Parkinson’s: Information for Ward Staff This leaflet highlights to ward staff the specific needs of a person with Parkinson’s. It provides an overview of the symptoms associated with the condition, an introduction to the drug used in its management, and a guide to care planning.

Order code B030 Caring for a Resident with Parkinson’s Disease This leaflet for care home staff explains the requirements of care home residents with Parkinson’s. It provides an insight into the symptoms, medications used and the kind of care that a person with Parkinson’s might require.

Order code B114 Essence of Care This booklet provides practical tools to help teams improve the care they provide to people with continence and bowel problems.

Order code B110

Working Together Locally This booklet outlines good practice for staff in local authority departments, providing a short introduction to the key issues that people with Parkinson’s may experience while living in the community.

Order code B100 Information Sheet Sheet Information

Hospital Stays: Information for Professionals The PDS receives many enquiries from people with Parkinson’s and their families who are concerned about hospital/respite care stays and how they can ensure that professionals involved in their care understand the challenges they face living with Parkinson’s.

This information sheet has been written to highlight some of the key aspects of Parkinson’s that the PDS and its advisors have identified as important for professionals to be aware of in a hospital or respite care setting. Examples of the personal experiences of people with Parkinson’s and their families have been included where appropriate to show how understanding or a lack of it affects their quality of life.

Key aspects of Parkinson’s Parkinson’s can be a complicated condition and no two people will experience the condition in quite the same way. Treatment is also individual and medication has to be titrated to suit the particular needs of each person. Although care provided is often excellent, the following key aspects of Parkinson’s are not always understood or recognised: • The nature of the disease process and progression.

• The individual nature of the drug treatment that has to be prescribed to suit the individual, in terms of what medication and doses they take and at what times of the day, and whether they are in tablet, liquid or injection form.

• The importance of listening to the person and their families and valuing their experience. They will already be working together to manage the condition in the best way for them.

• The effects of the drugs, in particular the ‘on/ off’ syndrome (which can cause disabling fluctuations in motor ability), wearing off effects and side effects, such as dyskinesias.

• Contraindicated drugs • Communication and swallowing difficulties related to the condition.

• Challenges associated with activities of daily living – mobility, eating, drinking, attention span and pain, for example, can all be complicated by the ‘on/off’ syndrome.

Failure to understand and incorporate these issues into a care plan means that the burden of care is greater for the professional and the quality of life of the person with Parkinson’s is affected.

Nature of the disease process Parkinson’s is a very individual condition which affects each person in a different way. The rate and way it progresses are also very variable.

The main motor symptoms of Parkinson’s (tremor, rigidity and slowness of movement) are also the main symptoms of a number of conditions that are grouped under the collective term ‘parkinsonism’. Parkinson’s disease is the most common form of parkinsonism and is often referred to as idiopathic Parkinson’s disease, which means that its cause is unknown. Other forms include multiple system atrophy (MSA) or progressive supranuclear palsy (PSP) for which there are separate self-help organisations.

Parkinson’s drug treatments Parkinson’s is one of the few neurological conditions for which specific drug treatment

Contact the the Parkinson’s Parkinson’s Disease Contact Disease Society Society freephone freephone helpline helpline for for advice advice and and information information on on 0808 0808 800 800 0303 0303

1

Information Sheet Information

The Keeping Moving Parkinson’s Exercise Programme

A rationale for physiotherapists and other health and social care professionals In 2003, the Parkinson’s Disease Society produced Keeping Moving, an exercise programme for people with Parkinson’s disease, devised by Bhanu Ramaswamy MCSP and Richard Webber MCSP, two senior physiotherapists in Sheffield. This information sheet explains the rationale behind the programme. Although aimed mainly at physiotherapists, it may also be of interest to other health and social care professionals working with people with Parkinson’s.

The evidence for physiotherapy intervention in Parkinson’s The evidence available to practitioners with regard to appropriate physiotherapy intervention for people with Parkinson’s up until the recent Rescue Project randomised control trial has either been of poor quality or absent. Physiotherapy has therefore had to rely on unsubstantiated anecdotal reports from professionals, people with Parkinson’s or carers regarding the effectiveness of input.

An effectiveness bulletin on neurological conditions (Chartered Society of Physiotherapy 2001) concluded that many areas of physiotherapy had yet to be sufficiently evaluated. This was a reflection obtained from several reviews comparing two or more therapeutic interventions or placebos with a treatment intervention, such as the two Cochrane systematic reviews (Deane et al, 2001 a and b) and that of Reuter & Engelhardt (2002). These reviews cannot be read to imply lack of effect, as all were inconclusive regarding the effectiveness

of physiotherapy interventions with no clear statistical or clinical evidence to prove the benefit from training.

The papers critiqued in this information sheet and other books read in the course of its development continue to theorise improvements expected from physical interventions, despite the lack of supporting evidence.

Another issue that becomes apparent in the papers reviewed is the lack of agreement about what is a ‘standard’ form of physiotherapy or what might constitute ‘best practice’.

Deane et al (2001 a and b) suggest that the capability of ‘standard’ physiotherapy should be proven first before examining variations in physiotherapeutic methods.

Clinical symptoms of Parkinson’s that may be influenced by physical therapies Considering the World Health Organization’s classification of consequences of disease (1980), physiotherapy has most effect on the management of disabilities (abilities), impairment (participation) and health of someone with Parkinson’s compared with anti-Parkinson’s medications that influence the disability. Physiotherapy is therefore advocated in combination with optimal timing of the effect of medications (Morris et al, 1998).

During the development of the Keeping Moving programme, articles on other styles of exercise (anecdotally recognised as having a positive effect on Parkinson’s) were sought for review.

These included the Alexander technique

Contact the the Parkinson’s Parkinson’s Disease Contact Disease Society Society freephone freephone helpline helpline for for advice advice and and information information on on 0808 0808 800 800 0303 0303

1

Hospital Stays: Information for Professionals This information sheet highlights some of the key aspects of Parkinson’s that professionals in a hospital or respite care setting should be aware of. This includes the nature of the condition, drug treatments and potential side effects, and the importance of listening to people with Parkinson’s and their families.

Order code FS62 The Keeping Moving Parkinson’s Exercise Programme This information sheet explains the rationale behind the PDS exercise programme Keeping Moving, which is available to people with Parkinson’s as a DVD and/or booklet. It also gives an overview of the activities in the programme.

Order code FS79

How to order PDS resources To order our booklets, information sheets, DVDs and audio tapes, or request a catalogue and order form containing a full list of everything available, please contact Sharward Services: Tel: 01473 212115 Fax: 01473 212114 Email: services@sharward.co.uk

Keeping Moving DVD (comes with booklet) Order code V011

Keeping Moving Exercise and Parkinson’s

by Richard Webber and Bhanu Ramaswamy Keeping Moving DVD.indd 3

19/05/2009 13:50:12

Issue 32 Autumn 2009

*Resources are free of charge up to 49 items, after which postage and packaging is charged.

Information can also be downloaded online at www.parkinsons.org.uk/publications

Parkinson’s News 23

Supporting professionals

... and for people affected by Parkinson’s The Society produces a wide range of resources for people affected by Parkinson’s – from books to explain the condition to young children, to a DVD for people who have been recently diagnosed (which now includes subtitles).

There are also around eighty information sheets that cover many subjects related to Parkinson’s, including benefits, non-motor symptoms and potential side effects. This enables people to choose the specific information they need, without being overwhelmed by information they don’t.

People affected by Parkinson’s are at the heart of the information we produce. Whenever we develop or update a resource we work closely with our Information Advisery Panel – a group of people with Parkinson’s, family members and supporters – who advise us on content, language and design. This means that our information is as relevant and accessible as possible. This was backed up by the findings of our 2007 Members’ Survey, with 93% of respondents

rating our publications as ‘very useful’ – higher than any other source of information.

“Information is empowering – it has helped me to manage my condition more positively.”

Member of the Parkinson’s Disease Society

How professionals can help We want to reach as many people as possible with our information, to enable more people to understand Parkinson’s, make informed choices and know they’re not alone in their experiences. You can help us by letting your patients, their families and carers, and your colleagues know about the Society and the range of resources we produce. We also include a range of resources specially compiled for people who have been diagnosed recently.

Join our Information Advisery Panel

We are looking for professionals to join our Information Advisery Panel. By giving us feedback on our new and existing resources for those who work in Parkinson’srelated fields, you can help us to ensure that they contain the information you need in the formats you want.

24 Parkinson’s News

For more information, contact Katie Jones, Information Resources Manager, on 020 7932 1311 or kjones@parkinsons.org.uk

Issue 32 Autumn 2009

Supporting professionals

Parkinson’s disease 2009: PDS annual conference The Parkinson’s Disease Society, in collaboration with the British Journal of Hospital Medicine, is delighted to announce the 11th Annual National Parkinson’s Disease Conference for health and social care professionals.

‘Parkinson’s disease 2009: making the most of your multidisciplinary team: developing services for patients’ is a one-day conference taking place on 25 August in London.

This interactive event will look at how current models of practice can assist you in developing and evaluating your Parkinson’s service.

The conference will bring together leading experts to discuss the central issues faced by professionals. It’s an excellent educational opportunity for anyone involved in the condition to update and extend their knowledge.

Participants will benefit from: l ideas

on how to develop a service in a Community Hospital or an Acute Trust

l tools

to help evaluate services in hospitals or care homes

l information

from service users about their experiences of good services

l information

from experts in the field about their thoughts on what a good service for people with Parkinson’s should look like

Organised by

6 CPD POINTS APPLIED FOR

The 11th national

Parkinson’s disease 2009 Making the most of your multidisciplinary team: developing services for patients King’s College London, The Strand, London

Tuesday 25th August 2009 in association with

The programme includes presentations on: l how

the PDS can help you in developing your service

l acute

PROGRAMME ADVISORS • Parkinson’s Disease Society, London

hospital team development

l community

hospital model

40 YEARS OF MEDICAL EDUCATION

l quality

neurology: are neurology services meeting the needs of patients?

l integrating l neurology l reviewing

Parkinson’s services and mental health services working together

care delivery for people with Parkinson’s

l Parkinson’s

Disease Audit: a tool for service development (see page 10 for more information) In addition, there will be a panel discussion on improving Parkinson’s services based on the recommendations from the All Party Parliamentary Group for Parkinson’s Disease (see page 7 for more information).

Book now to secure your place Visit: www.mahealthcareevents.co.uk Call: 020 7501 6762

Issue 32 Autumn 2009

PDS educational bursaries The Parkinson’s Disease Society has a number of bursaries available to help health and social care professionals attend ‘Parkinson’s disease 2009: making the most of your multidisciplinary team: developing services for patients.’

For more details, contact Daiga Heisters, National Education Adviser at professionals@parkinsons.org.uk Parkinson’s News 25

Supporting professionals

Dates for your diary August 11th National Conference: Parkinson’s Disease 2009 Making the most of your multidisciplinary team: developing services for people with Parkinson’s Organised by the Parkinson’s Disease Society in association with MA Healthcare Ltd 25 August Kings College London www.mahealthcareevents.co.uk

September 13th Congress of the European Federation of Neurological Societies – EFNS 2009 12–15 September Florence, Italy www.kenes.com/efns2009/index. asp Developing the Disease-Modifying Possibilities of Exercise on Parkinson’s Organised by members of the Parkinson’s Disease Society’s Special Parkinson’s Research Interest Group (SPRING) 24–25 September London www.parkinsons.org.uk/spring Third Annual Parkinson’s Disease Therapeutics Conference Organised by the Michael J Fox Foundation for Parkinson’s Research and the New York Academy of Sciences 30 September New York City, NY www.michaeljfox.org

October The Third World Congress on Controversies in Neurology (CONy) 8–11 October Prague, Czech Republic www.comtecmed.com/cony

26 Parkinson’s News

23rd Annual Symposium on Etiology, Pathogenesis, and Treatment of PD and Other Movement Disorders 11 October Baltimore, MD www.parkinson-study-group.org 19th World Congress of Neurology WCN 2009 24–30 October Bangkok, Thailand www.wcn2009bangkok.com

December World Federation of Neurology (WFN) XVIII World Congress on Parkinson’s Disease and Related Disorders 13–16 December Miami Beach, Florida www.kenes.com/parkinson

Save the date 2nd Parkinson's Disease Society Research Conference York, England 1–2 November 2010 Register your interest at conference@parkinsons.org.uk 2nd World Parkinson Congress 28 September – 1 October 2010 Glasgow, Scotland

Issue 32 Autumn 2009

Research update

Conference reviews

Non-Motor Symptoms of Parkinson’s Disease: What’s New?

Fourth meeting of the UK Parkinson’s Disease Non-Motor Group 21 March 2009, London. Reviewed by Claire Bale, Research Communications Officer

Smell and risk of Parkinson’s Professor Heinz Reichmann (University of Dresden) discussed recent research into the relationship between loss of sense of smell and risk of Parkinson’s. Most people affected by Parkinson’s experience problems with their sense of smell at some stage, and recent research studies have shown that loss of sense of smell may increase the risk of developing Parkinson’s by around 10%. ‘Smell tests’ that are currently being developed may prove to be a powerful diagnostic tool for Parkinson’s in the future.

Lessons from brain imaging Professor David Brooks (Imperial College, London) explained how brain imaging studies have revealed clues to the dopaminergic roots of many of the non-motor aspects of Parkinson’s; including executive dysfunction, pain, sleep, fatigue, olfaction, dementia and depression.

Understanding the far-reaching effects of dopamine imbalance within the Parkinson’s brain will help us use dopaminergic therapies to better treat the common and distressing non-motor aspects.

Looking beyond dopamine Professor Peter Jenner (Kings College, London) described the widespread pathology we see throughout the Parkinson’s brain. Many neurotransmitters are involved so it is vital that we look beyond dopamine. A major stumbling block for tackling non-motor aspects of Parkinson’s is that current animal models focus almost entirely upon dopamine and movement. We need to develop better models that reflect Parkinson’s more realistically, produce pathology throughout the entire brain and allow us to really get to the bottom of the non-motor aspects.

When should we start treatment for Parkinson’s?

Professor Anthony Schapira (University College, London) explored the complex issues surrounding when to start treatment for Parkinson’s. There is an extended period before symptoms emerge during which 70% of dopamine nerve cells die. As nerve cells die, the remaining cells Issue 32 Autumn 2009

become increasingly overloaded. Could earlier treatment with dopamine replacement therapy ease the strain on the dwindling nerve cells, and therefore slow disease progression? We must also consider quality of life.

Earlier treatment seems to improve quality of life and may also benefit patients in the longer term.

Sleep problems Dr Isabelle Arnulf (Pitie-Salpetriere Hospital, Paris) and Professor Claudia Trenkwalder (University of Gottingen) discussed two major challenges facing doctors dealing with sleep problems in Parkinson’s. Excessive daytime sleepiness affects around a quarter of people with Parkinson’s. It has a very significant impact on quality of life, but the biggest danger is the increased risk of driving accidents.

REM sleep behaviour disorder (RBD) is another common problem that affects roughly one in five people with Parkinson’s. RBD may be a sign of the spread of Lewy bodies through the brain and indicate an increased risk of developing dementia. Recognising and diagnosing RBD can be difficult as many patients do not disclose, and testing the electrical activity of muscles with an electromyogram is not widely available to confirm diagnoses.

At the moment we understand very little about the sleep problems that affect people with Parkinson’s, where they come from or how to treat them.

Bladder problems Professor Clare Fowler (University College, London) advised caution when treating people with Parkinson’s with bladder dysfunction. It is important to always first rule out prostate problems. Around 20% of people with Parkinson’s experience bladder problems at some stage, with the most commonly seen issues increased urgency and nocturia.

Typically patients affected by bladder difficulties have more advanced Parkinson’s, and can be severely disabled and cognitively impaired. This makes bladder problems more difficult to manage, but asking them to keep a ‘fluid’ diary can be very helpful.

Parkinson’s News 27

Research update

Progress: Advancing Parkinson’s Research

The Parkinson’s Disease Society research conference 3–4 November 2008, York Reviewed by Dr Neil Archibald, PDS Research Fellow, Newcastle University Neurology, with all its sub-speciality interests, is well served by the dazzling array of conferences that pepper almost every month of the year. In the era of the ‘mega-conference’, with thousands of delegates, satellite symposia and parallel sessions, one could be forgiven for overlooking the arrival of a new kid on the block. That would be a shame however, as the recent Parkinson’s Disease Society (PDS) conference in York brings something a little different to the table. With a focus on showcasing the work of young researchers, many supported or funded by the PDS, alongside that of keynote speakers from around the world, there was a relaxed and almost ‘family’ feel to the two-day meeting.

After a welcome from the Director of Research and Development at the PDS, Dr Kieran Breen, the conference kicked off in earnest with Bastiaan Bloem’s entertaining and fascinating tour of gait and balance disturbances in Parkinson’s disease and related disorders. With a focus on clinical assessment of gait disorders, why and how people with Parkinson’s fall, the neural correlates of gait and the development and delivery of cost-effective community physiotherapy in Parkinson’s, the tone was set for a meeting marrying both basic science and clinical approaches to movement disorders. This will allow research to be translated into new pharmacological and nonpharmacological treatment options for Parkinson’s.

The second keynote speaker, Jeffrey Kordower, outlined state-of-the-art stem cell and gene therapy research, both in non-human primate models of Parkinson’s and, most importantly, the early trial results in humans. After the disappointment of the ‘false dawn’ of foetal transplants for Parkinson’s treatment, the speaker introduced a necessary note of caution in the interpretation of results from nonblinded non-placebo controlled surgical trials in the field.

Despite the media interest, it seems stem cell therapy is a long way from the bedside or neurosurgical theatre, but the pace of progress in gene therapy research is brisker. Safe and tolerable it may be, in the small number of selected patients so far to receive the treatment, but we must wait patiently for the larger-scale trial results before loosening the grip on the reins of our enthusiasm for another surgical breakthrough in the treatment of Parkinson’s.

The last of the keynote speakers, Olivier Rascol, provided an insightful tour-de-force of pharmacological ‘symptomatic’ 28 Parkinson’s News

treatments for Parkinson’s. Alas, we seem as far as ever from neuroprotection, so long the ‘holy grail’ for patients and clinicians alike. The pharmacological armoury is swelling however, with long-acting dopamine agonists and partial agonists, transdermal patches and drugs with non-dopaminergic mechanisms of action. Which of the dizzying array of cholinesterase inhibitors, adenosine A2 antagonists, serotonergic agonists and antagonists and noradrenergic antagonists will find a niche in clinical practice will depend on high-quality trials. But both surgical and pharmacological treatment options are evolving steadily and, importantly, offer something to both patients, carers, researchers and doctors alike – hope.

On to the flurry of short platform sessions now, where I must declare an immediate conflict of interest. Setting aside my own 15 minutes of ‘fame’ I was struck by the broad canvas of the meeting and the enthusiasm communicated by all those presenting their research – many for the first time. We learnt of the influence of the tau genotype on dementia susceptibility in Parkinson’s disease and how our current pathological staging systems leave many questions on the role of alpha-synuclein unanswered. The fascinating finding, in a large autopsy sample, of widespread alphasynuclein pathology in many patients without clinical signs of dementia or extrapyramidal symptoms, heightens the ongoing debate as to the precise role Lewy bodies and Lewy neurites play in the development of Parkinson’s and dementia with Lewy bodies.

We were introduced to the rat model of levodopa-induced dyskinesia with thoughts on the aetiological factors involved and the potential use of topiramate in its management – at least in rats! We also learned that dyskinetic rats find that unfamiliar surroundings worsen their dyskinesias whilst their favourite coloured sawdust in a familiar cage reduced the abnormal movements. Sawdust on the movement disorder clinic floor — a move unlikely to curry favour with infection control gurus in the NHS but a fascinating thought nonetheless.

The preliminary results of the PD-SURG trial were also presented, demonstrating a benefit in quality of life and motor function, compared to best medical management, for those undergoing deep brain stimulation (DBS).

Issue 32 Autumn 2009

Research update This confirms the bedside experience of most involved in referring patients for DBS although the problem of identifying the candidates most likely to benefit remains a difficult issue. Early results from the PROMS-PD study, examining mood disturbances in Parkinson’s were also covered. We are only now beginning to appreciate the impact of depression and anxiety on people with Parkinson’s and this important study should help us discern the clinical phenotypes of mood disorders in Parkinson’s and throw light on the best treatment options for those affected.

As ever, one of the highlights of the meeting was the poster sessions, with an opportunity to chat with researchers on a more informal footing. I was struck not only by the high quality of the research but also by the breadth of projects on show. It would appear that almost no animal species is safe from our attempts to model the genetic, cellular and environmental factors that might contribute to the development of Parkinson’s. In addition to the standard mice and rat models I was particularly interested to see the growth in research using the very accessible central nervous systems of Drosophila, zebrafish and nematodes.

In the pharmacology collection, the focus seemed to be on the search for novel neuroprotective agents to prevent the striatonigral loss instigated by neuronal insults such as MPTP. In the absence of methods to promote parkinsonism in animals mimicking the chronic decline of human Parkinson’s the use of such agents remains a necessity.

I was heartened to see a clinico-pathological study from London suggesting that our clinical acumen does yield accurate diagnoses of Parkinson’s and related disorders,

ing : Advanc h Progress rc a n’s Rese Parkinso cts

nd Abstra gramme a

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at least in those patients attending specialist movement disorder services. Non-motor symptoms such as dementia, visual hallucinations and anxiety, as well as orthostatic hypotension also seem highly characteristic of pathologically proven Parkinson’s cases. I was also interested to read work from Northumbria NHS Trust on the prevalence and nature of urinary symptoms in Parkinson’s – a seemingly ubiquitous problem in the condition and worthy of a much higher profile than it usually receives.

Those able to stay for the conference conclusion were fortunate to witness the prize giving ceremony for the two best posters. The honours went jointly to two groups of researchers; one from the University of Manchester and one including contributions from Northumbria, Newcastle, Glasgow and Belgium. The former received the award for their work on changes in the expression of G-protein signalling in the striatum of a unilateral model of Parkinson’s and levodopa-induced dyskinesia and the latter for their studies on optimal cognitive and auditory cueing strategies for gait problems in Parkinson’s.

The prize originates from the generosity of the family of Dennis Pooley, who struggled with Parkinson’s and Lewy body dementia until his untimely death. I can think of no better memorial to his life, nor a more inspiring reminder of why it is that we had all been gathered under the same roof for the previous two days. My only worry for next year’s conference is that the organisers might need to find a bigger venue, as a quick straw poll suggested most attendees had found the meeting as enjoyable as I and would hope to return. See you there in 2010?

Article reproduced with the kind permission of Advances in Clinical Neuroscience and Rehabilitation.

Progress: Advancing Parkinson’s Research abstract booklet comes as a supplement with this edition of Parkinson’s News The 2nd PDS research conference will take place on 1–2 November 2010 in York, England.

ciety isease So inson’s D The Park ce en er nf co research , UK mber 2008

3–4 Nove

York

Issue 32 Autumn 2009

Register your interest by emailing conference@parkinsons.org.uk

Parkinson’s News 29

Research update

New research publications Risk and prevention REM sleep behaviour disorder Quantifying the risk of neurodegenerative disease in idiopathic REM sleep behavior disorder Postuma RB et al (2009) Neurology; Epub ahead of print OBJECTIVE: Idiopathic REM sleep behavior disorder (RBD) is a potential preclinical marker for the development of neurodegenerative diseases, particularly Parkinson disease (PD) and Lewy body dementia. However, the long-term risk of developing neurodegeneration in patients with idiopathic RBD has not been established. Obtaining an accurate picture of this risk is essential for counseling patients and for development of potential neuroprotective therapies. METHODS: We conducted a follow-up study of all patients seen at the sleep disorders laboratory at the Hôpital du Sacré Coeur with a diagnosis of idiopathic RBD. Diagnoses of parkinsonism and dementia were defined according to standard criteria. Survival curves were constructed to estimate the 5-, 10-, and 12-year risk of developing neurodegenerative disease. RESULTS: Of 113 patients, 93 (82%) met inclusion criteria. The mean age of participants was 65.4 years and 75 patients (80.4%) were men. Over the follow-up period, 26/93 patients developed a neurodegenerative disorder. A total of 14 patients developed PD, 7 developed Lewy body dementia, 4 developed dementia that met clinical criteria for AD, and 1 developed multiple system atrophy. The estimated 5-year risk of neurodegenerative disease was 17.7%, the 10-year risk was 40.6%, and the 12-year risk was 52.4%. CONCLUSIONS: Although we have found a slightly lower risk than other reports, the risk of developing neurodegenerative disease in idiopathic REM sleep behavior disorder is substantial, with the majority of patients developing Parkinson disease and Lewy body dementia.

Ageing Incidence and remaining lifetime risk of Parkinson disease in advanced age Driver JA et al (2009) Neurology; 72(5);432-438 OBJECTIVE: To estimate the incidence and lifetime risk (LTR) of Parkinson disease (PD) in a large cohort of men.

BACKGROUND: Age is the strongest risk factor for PD, but whether its incidence continues to increase after age 80 years remains unclear. METHODS: Prospective cohort of 21,970 US male physicians aged 40-84 years at baseline who did not report PD before study entry. Participants self-reported PD on yearly follow-up questionnaires, and all deaths were confirmed. We calculated incidence rates and cumulative incidence using a modified Kaplan-Meier analysis. LTR was estimated by adjusting cumulative 30 Parkinson’s News

incidence for competing risks of death. RESULTS: Five hundred sixty-three cases of PD were identified over 23 years of follow-up. The crude incidence rate of PD was 121 cases/100,000 person-years. Age-specific incidence rates increased sharply beginning at age 60 years, peaked in those aged 85-89 years, and declined beginning at age 90 years. Cumulative incidence substantially overestimated the long-term risk of PD, particularly in those aged 80 years and older. Cumulative incidence was 9.9% (95% confidence interval [CI] 8.48%-11.30%) from ages 45 to 100 years, whereas LTR for the same period was 6.7% (95% CI 6.01%-7.43%). The incidence and LTR of PD decreased with increasing exposure to smoking. CONCLUSIONS: Our study provides evidence that the incidence of Parkinson disease (PD) in men increases through age 89 years.

Whether the subsequent decline represents a true decrease in risk remains to be established. A history of smoking substantially decreased the incidence and lifetime risk of PD. Incidence studies that do not adjust for competing risks of death may overestimate the true risk of PD in the elderly.

Genetics Glucocerebrosidase mutations in clinical and pathologically proven Parkinson's disease Neumann J et al (2009) Neurology; Epub ahead of print Mutations in the glucocerebrosidase gene (GBA) are associated with Gaucher's disease, the most common lysosomal storage disorder. Parkinsonism is an established feature of Gaucher's disease and an increased frequency of mutations in GBA has been reported in several different ethnic series with sporadic Parkinson's disease. In this study, we evaluated the frequency of GBA mutations in British patients affected by Parkinson's disease. We utilized the DNA of 790 patients and 257 controls, matched for age and ethnicity, to screen for mutations within the GBA gene. Clinical data on all identified GBA mutation carriers was reviewed and analysed. Additionally, in all cases where brain material was available, a neuropathological evaluation was performed and compared to sporadic Parkinson's disease without GBA mutations. The frequency of GBA mutations among the British patients (33/790 = 4.18%) was significantly higher (P = 0.01; odds ratio = 3.7; 95% confidence interval = 1.12-12.14) when compared to the control group (3/257 = 1.17%). Fourteen different GBA mutations were identified, including three previously undescribed mutations, K7E, D443N and G193E. Pathological examination revealed widespread and abundant alpha-synuclein pathology in all 17 GBA mutation carriers, which were graded as Braak stage of 5-6, and had McKeith's limbic or diffuse neocortical Lewy body-type pathology. Diffuse neocortical Lewy body-type pathology tended to occur more frequently in the group with Issue 32 Autumn 2009

Research update GBA mutations compared to matched Parkinson's disease controls. Clinical features comprised an early onset of the disease, the presence of hallucinations in 45% (14/31) and symptoms of cognitive decline or dementia in 48% (15/31) of patients. This study demonstrates that GBA mutations are found in British subjects at a higher frequency than any other known Parkinson's disease gene. This is the largest study to date on a non-Jewish patient sample with a detailed genotype/phenotype/pathological analyses which strengthens the hypothesis that GBA mutations represent a significant risk factor for the development of Parkinson's disease and suggest that to date, this is the most common genetic factor identified for the disease.

Diagnosis Diagnosis and the premotor phase of Parkinson disease Tolosa E et al (2009) Neurology; 72 (7 Suppl):S12-20 Clinical, neuroimaging, and pathologic studies have provided data suggesting that a variety of nonmotor symptoms can precede the classic motor features of Parkinson disease (PD) by years and, perhaps, even decades. The period when these symptoms arise can be referred to as the "premotor phase" of the disease. Here, we review the evidence supporting the occurrence of olfactory dysfunction, dysautonomia, and mood and sleep disorders, in this premotor phase of PD. These symptoms are well known in established PD and when presenting early, in the premotor phase, should be potentially considered as an integral part of the disease process.

Even though information on the premotor phase of PD is rapidly accumulating, the diagnosis of premotor PD remains elusive at this time. Should a safe and effective treatment with disease-modifying or neuroprotective potential in PD become available, identifying individuals in the premotor phase will become a serious priority.

Smell loss Prevalence of smell loss in Parkinson's disease - A multicenter study Haehner A et al (2009) Parkinsonism and Related Disorders; Epub ahead of print Previous data on the prevalence of olfactory dysfunction in Parkinson's disease (PD) range from 45% to 90%. The present multicenter study aimed to provide data on the prevalence of smell loss in a large sample of PD patients from three independent populations. Olfactory sensitivity was tested in 400 patients from Australia, Germany, and The Netherlands by means of a psychophysical olfactory test, the "Sniffin' Sticks", which is comprised of 3 subtests of olfactory function. Out of the total number of patients 45.0% presented as functionally anosmic, 51.7% were hyposmic, whereas only 3.3% were normosmic. This indicates that 96.7% of PD patients present with significant olfactory Issue 32 Autumn 2009

loss when compared to young normosmic subjects. This figure falls to 74.5%, however, when adjusted to age-related norms. Thus, olfactory dysfunction should be considered as a reliable marker of the disease.

Biomarkers Levels of brain related proteins in cerebrospinal fluid: an aid in the differential diagnosis of parkinsonian disorders Constantinescu R et al (2009) Parkinsonism and Related Disorders; 15(3):205-212 Parkinsonian disorders such as Parkinson's disease (PD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD), are a large group of common neurodegenerative diseases. The initial differential diagnosis can be extremely challenging with major implications for prognosis. The 42 amino acid fragment of amyloid-beta (Abeta42), neurofilament light chain (NFL), neurofilament heavy chain (pNFH), tau protein, glial fibrillary acidic protein (GFAP), neuron specific enolase (NSE), S-100B protein, and myelin basic protein (MBP) are brain related proteins (BRP) present in neurons and glia cells. They are released in the cerebrospinal fluid (CSF) after brain tissue damage caused by a variety of neurological diseases, including the parkinsonian disorders. A review of the literature shows that, carefully interpreted, the CSF levels of BRP can be of value in the differential diagnosis of parkinsonian disorders.

Motor symptoms Freezing Validation of the freezing of gait questionnaire in patients with Parkinson's disease Giladi N et al (2009) Movement Disorders; Epub ahead of print To revalidate the Freezing of Gait Questionnaire (FOG-Q), patients with Parkinson's disease (PD) were randomly assigned to receive rasagiline (1 mg/day) (n = 150), entacapone (200 mg with each dose of levodopa) (n = 150), or placebo (n = 154). Patients were assessed at baseline and after 10 weeks using the FOG-Q, Unified Parkinson's Disease Rating Scale (UPDRS), Beck Depression Inventory (BDI), and Parkinson's Disease Questionnaire (PDQ-39).

FOG-Q dimensionality, test-retest reliability, and internal reliability were examined. Convergent and divergent validities were assessed by correlating FOG-Q with UPDRS, BDI, and PDQ-39. Comparisons between FOG-Q item 3 and UPDRS item 14 were also made. Principal component analysis indicated that FOG-Q measures a single dimension. Test-retest reliability and internal reliability of FOG-Q score was high. FOG-Q was best correlated to items of the UPDRS relating to walking, general motor issues, and mobility. Correlations between baseline and Parkinson’s News 31

Research update endpoint suggested that FOG-Q item 3 is at least as reliable as UPDRS item 14. At baseline, 85.9% of patients were identified as "Freezers" using FOG-Q item 3 (>/=1) and 44.1% using UPDRS item 14 (>/=1) (P < 0.001). FOG-Q was a reliable tool for the assessment of treatment intervention.

FOG-Q item 3 was effective as a screening question for the presence of FOG. (c) 2007 Movement Disorder Society.

Balance and falls Impaired attention predicts falling in Parkinson's disease Allcock LM et al (2009) Parkinsonism and Related Disorders; 15(2):110-115 BACKGROUND: Cognitive deficits, in particular deficits of attention and executive function, may affect postural sway and balance in Parkinson's disease (PD). Our objective was to determine whether measures of attention were associated with falls in a large cohort of subjects with PD studied prospectively. METHODS: Patients meeting UK PD Society Brain Bank Criteria were included. Assessment included UPDRS III and the Cognitive Drug Research computerised assessment battery (CDR) from which Power of Attention, Continuity of Attention, cognitive reaction time and reaction time variability were derived. Falls were assessed prospectively using monthly fall diaries returned over a year following baseline assessment. RESULTS: One hundred and sixty four subjects completed fall diary datasets. One hundred and three (63%) fell one or more times during the 12 month period. Regression analysis revealed an association of fall frequency with poorer Power of Attention and increased reaction time variability, which was retained after correcting for UPDRS scores.

CONCLUSIONS: Reduced power of attention and increased reaction time variability are associated with increased fall frequency in PD. This has implications for the identification of those most at risk of falling, and for the management and prevention of falls in this patient group.

Balance confidence and functional mobility are independently associated with falls in people with Parkinson's disease Mak MK and Pang MY (2009) Journal of Neurology; Epub ahead of print The present study aimed to examine the association of falls with self-perceived balance confidence level, and balance and mobility performance in patients with Parkinson's disease (PD). Forty-nine healthy subjects and 71 subjects with PD completed the study. Among the PD patients, 33 (46%) were fallers and 38 were non-fallers. All subjects were tested with the activities-specific balance confidence scale (ABC), one-leg-stance test (OLS), and timed-up-and-go test (TUG). Results indicated that PD fallers had significantly lower ABC scores, shorter OLS times and longer times to complete TUG than PD non-fallers (P < 0.05). Having a high 32 Parkinsonâ&#x20AC;&#x2122;s News

ABC score (>80) was significantly associated with a lower fall risk, after adjusting for age, gender, and duration of PD, and for depression [odds ratio (OR) = 0.06, P = 0.020]. For performance-based measures of balance and mobility, a longer TUG time (>/=16 s) was independently associated with increased risk of falling after controlling for relevant factors (OR = 3.86, P = 0.043); OLS time, however, was not significantly associated with falls. A lower self-perceived balance confidence level and a prolonged time to complete TUG were associated with increased risk of falling in patients with PD. Interventions to improve these modifiable risk factors could be useful in reducing future falls in the PD population and will require further study.

Non-motor symptoms Cognitive decline Mild cognitive impairment is common in Parkinson's disease patients with normal Mini-Mental State Examination (MMSE) scores Mamikonyan E et al (2009) Parkinsonism and Related Disorders; 15(3):226-231 PURPOSE: Cognitive impairment occurs in the majority of Parkinson's disease (PD) patients, but little is known about detection of mild cognitive impairment (MCI) in this population. We report on the frequency and characteristics of cognitive deficits in PD patients with intact global cognition based on Mini-Mental State Examination (MMSE) performance. METHODS: One hundred and six PD patients with normal age- and education-adjusted MMSE scores (mean [SD] score=29.1 [1.1]) were administered standardized neuropsychological tests assessing memory, executive function, and attention. Impairment on a cognitive domain was a low score (i.e. >or=1.5 SD below the published normative mean) on at least two measures or tests (for memory and executive abilities) or a single measure (for attention). RESULTS: Mild cognitive impairment was found in 29.2% of PD patients, with 17.9% demonstrating single domain and 11.3% multiple domain impairment. Memory and attention impairment were most common (15.1% and 17.0%, respectively), followed by executive impairment (8.5%). Depending on the measure of disease severity chosen, increasing age and disease severity, anti-anxiety medication use, and a suggestion for increasing severity of daytime sleepiness were independent predictors of cognitive impairment. CONCLUSIONS: Cognitive deficits are common in PD patients with "normal" cognition based on MMSE performance, suggesting that MCI is under-recognized in clinical practice due to routine use of insensitive screening instruments. In contrast with some previous reports, early memory impairment may be as common as either executive or attentional deficits in PD. In addition, psychiatric medication use and daytime sleepiness may be reversible or treatable contributors to cognitive impairment.

Issue 32 Autumn 2009

Research update Fatigue Towards an understanding of fatigue in Parkinson's disease Hagell P and Brundin L (2009) Journal of Neurology Neurosurgery and Psychiatry; Epub ahead of print OBJECTIVES: To gain an improved understanding of fatigue in Parkinson's disease (PD) by exploring possible predictors among a wide range of motor and non-motor aspects of PD. METHODS: 118 consecutive PD patients (54% men; mean age, 64 years) were assessed regarding fatigue, demographics and a range of non-motor and motor symptoms. Variables significantly associated with fatigue scores in bivariate analyses were used in multiple regression analyses with fatigue as the dependent variable.

RESULTS: Fatigue was associated with increasing Hoehn & Yahr stages, specifically transition from stages I-II to stages III-V. Regression analysis identified five significant independent variables explaining 48% of the variance in fatigue scores: anxiety, depression, lack of motivation, Unified PD Rating Scale (UPDRS) motor score and pain.

Gender, age, body mass index, PD duration, motor fluctuations, dyskinesias, symptomatic orthostatism, thought disorder, cognition, drug treatment, sleep quality and daytime sleepiness were not significantly associated with fatigue scores. When considering individual motor symptom clusters instead of the UPDRS motor score, only axial/postural/gait impairment was associated with fatigue. CONCLUSIONS: We found fatigue to be primarily associated with symptoms of depression and anxiety, and with compromised motivation, parkinsonism (particularly axial/postural/gait impairment) and pain. These results are in agreement with findings in other disorders and imply that fatigue should be considered a separate PD entity differing from, e.g. excessive daytime sleepiness. Fatigue may have a distinguished neurobiological background, possibly related to neuroinflammatory mechanisms. This implies that novel treatment options, including anti-inflammatory therapies, could be effective.

Sleep problems Sleep disorders and daytime sleepiness in Parkinson's disease Monderer R and Thorpy M (2009) CurrentNeurology and Neuroscience Reports; 9(2):173-180 Patients with Parkinson's disease commonly have sleep disturbances that significantly alter quality of life but are often underrecognized. Awareness of the importance of these sleep disorders has been growing, and more research is being conducted. Patients with Parkinson's disease have difficulties that not only include falling asleep and staying asleep but also include excessive daytime sleepiness and abnormal events during sleep. These sleep disturbances are often multifactorial in nature, resulting from degeneration of the cortical sleep centers to effects of medications taken to treat the motor symptoms associated with Parkinson's Issue 32 Autumn 2009

disease. A thorough evaluation should be performed to assess for the presence of sleep disturbances and daytime sleepiness. Many therapeutic strategies can be used to treat sleepiness and sleep disturbances in Parkinson's disease to improve the patient's overall health, psychological wellbeing, and quality of life.

Apathy Examination of the Lille Apathy Rating Scale in Parkinson disease Zahidne LB et al (2009) Movement Disorders; Epub ahead of print Apathy is a unique, multidimensional syndrome commonly encountered in patients with Parkinson disease (PD).

Recently, the Lille Apathy Rating Scale (LARS), a semistructured interview yielding a global score, and composite subscores for different domains of apathy (i.e., cognitive, behavioral, affective, self awareness), was developed and given to a sample of patients with PD in France. This study is the first outside of its original developers to examine the English language version of the LARS in PD. We found the LARS to be a coherent instrument demonstrating both convergent and divergent validity, as compared to the Apathy Scale (AS) and Beck Depression Inventory (BDI-II). Using a receiver operating characteristic (ROC) analysis comparing the LARS to the AS, a validated and widely-used measure, we identified a cut-off score (sensitivity = 64%, specificity = 92%, PPV = 88%, NPV = 75%) that was higher than that proposed by the original authors, who derived their cut-off by comparing LARS global scores to clinical judgments of apathy. Although the present study does not compare the LARS to a diagnostic gold standard or promote its utility for diagnosing apathy, it provides further support for the LARS as a promising instrument to examine apathy in PD. (c) 2009 Movement Disorder Society

Multidisciplinary care Physiotherapy Physical therapy in Parkinson's disease: evolution and future challenges Keus SH et al (2009) Movement Disorders; 24(1):1-14 Even with optimal medical management using drugs or neurosurgery, patients with Parkinson's disease (PD) are faced with progressively increasing mobility problems.

For this reason, many patients require additional physical therapy. Here, we review the professional evolution and scientific validation of physical therapy in PD, and highlight several future challenges. To gain insight in ongoing, recently completed or published trials and systematic reviews, we performed a structured literature review and contacted experts in the field of physical therapy in PD. Following publication of the first controlled clinical trial in Parkinsonâ&#x20AC;&#x2122;s News 33

Research update 1981, the quantity and quality of clinical trials evaluating the efficacy of physical therapy in PD has evolved rapidly.

In 2004 the first guideline on physical therapy in PD was published, providing recommendations for evidence-based interventions. Current research is aiming to gather additional evidence to support specific intervention strategies such as the prevention of falls, and to evaluate the implementation of evidence into clinical practice. Although research focused on physical therapy for PD is a relatively young field, high-quality supportive evidence is emerging for specific therapeutic strategies. We provide some recommendations for future research, and discuss innovative strategies to improve the organization of allied health care in PD, making evidence-based care available to all PD patients.

Does auditory rhythmical cueing improve gait in people with Parkinson's disease and cognitive impairment? A Feasibility study Rochester L et al (2009) Movement Disorders; Epub ahead of print Gait and balance problems resulting from Parkinson's disease (PD) are more common in people with PD and dementia (PDD), yet, it is unknown whether the benefits of cueing therapy for mobility generalize to them. We aimed to determine the feasibility and effectiveness of auditory cues to improve gait in PD and cognitive impairment (PDCI). Nine participants with PD-CI walked with and without auditory cues using two different strategies: (1) Cue with temporal instruction to "step in time to the beat," (2) Cue with spatiotemporal instruction to "take a big step in time to the beat." Cues were delivered with a metronome at preferred stepping frequency while on medication during single and dual-task gait. Gait was assessed using GAITRite and walking speed, stride amplitude, step frequency, and variability (CV%) of step and double limb support time were measured. Data were analyzed in SPSS version 16 using fixed-effect linear mixed models. An adjusted, P value of 0.01 was considered significant. Participants were men, aged 74.89 (+/-6.45) years with median MMSE of 22 (range 20.5-25) and UPDRS III score of 44 (35.5-47.0). Participants complied with testing and instructions. The cue that focused attention on both temporal and spatial parameters of gait significantly improved single and dual-task walking speed and stride amplitude. This study provides evidence for the potential of cueing to improve gait in PD-CI. Only individuals with mild CI were included, and the effect with increased CI and different types of dementia requires further evaluation. (c) 2009 Movement Disorder Society.

Exercise training Treadmill training for the treatment of gait disturbances in people with Parkinson's disease: a mini-review Herman T et al (2009) Journal of Neural Transmission; 116(3):307-318 34 Parkinsonâ&#x20AC;&#x2122;s News

This report reviews recent investigations of the effects of treadmill training (TT) on the gait of patients with Parkinson's disease. A literature search identified 14 relevant studies.

Three studies reported on the immediate effects of TT; overground walking improved (e.g., increased speed and stride length) after one treadmill session. Effects persisted even 15 min later. Eleven longer-term trials demonstrated feasibility, safety and efficacy, reporting positive benefits in gait speed, stride length and other measures such as disease severity (e.g., Unified Parkinson's Disease Rating Scale) and healthrelated quality of life, even several weeks after cessation of the TT. Long-term carryover effects also raise the possibility that TT may elicit positive neural plastic changes. While encouraging, the work to date is preliminary; none of the identified studies received a quality rating of Gold or level Ia. Additional high quality randomized controlled studies are needed before TT can be recommended with evidencebased support.

Disease progression The effect of onset age on the clinical features of Parkinson's disease Wickremaratchi MM et al (2009) European Journal of Neurology; Epub ahead of print Many clinicians view age at onset as an important determinant of clinical phenotype in Parkinson's disease (PD) and this has been reinforced by the identification of Mendelian genes that account for some cases of younger onset PD. A systematic review of OVID Medline for articles relevant to the relationship between clinical features and age at onset in PD published in English between 1950-2007 was performed. There are very few prospective community based studies which focus on the relationship between age at onset and the features of PD and a variety of case definitions are used in the literature. Most studies of young onset PD are based on specialist clinic referral series. The available evidence suggests that PD patients with a younger age at onset have: (i) a slower disease progression, (ii) an increased rate of dystonia at onset and during treatment, (iii) a lower rate of dementia and (iv) an increased rate of dyskinesias in response to l-DOPA treatment. The majority of the available studies do not report patient genotype data, but it is probably that the clinical heterogeneity of PD will be further refined with detailed clinico-genetic studies.

Relationship between clinical phenotypes and cognitive impairment in Parkinson's disease (PD) Oh JY et al (2009) Archives of Gerontology and Geriatrics; Epub ahead of print Most patients with idiopathic PD (IPD) show variable degrees of cognitive decline. The purpose of this study was to evaluate the relationship between the predominant motor symptom at the time of disease onset and the level Issue 32 Autumn 2009

Research update of cognitive function in patients with IPD. A total of 159 patients with IPD were enrolled in this study. The patients' initial motor symptoms were classified into three types: tremor-dominant (TD), bradykinesia and rigidity-dominant (BRD), gait and postural instability-dominant (GPD).

Disease severity was rated according to the Hoehn-Yahr classification (H&Y stage). Overall cognitive status was evaluated using the Korean versions of the Mini-Mental State Examination (K-MMSE) and the Modified Mini-Mental State (3MS) tests. The GPD group showed the lowest scores of the K-MMSE/3MS, and the patients with TD showed the best performance in the cognitive analysis (p<0.05). The patients who were older at disease onset showed worse cognitive performance than those the patients who were younger at disease onset (p<0.05). There was no difference in cognitive status according to H&Y stages. The accurate classification of initial motor symptoms and the detailed history, including the exact onset age of IPD, may allow us to predict cognitive decline in IPD

Carers Predictors of loneliness in caregivers of persons with Parkinson's disease McRae C et al (2009) Parkinsonism and Related Disorders; Epub ahead of print This study examined loneliness among caregivers of individuals with Parkinson's disease (PD). The sample included 70 caregivers (74% female; 96% spouses) who were currently living with the patient. A postal survey was sent to caregivers of persons with PD on the mailing list of a regional Parkinson association; response rate was 39%.

Assessment instruments included the UCLA Loneliness Scale, Social Provisions Scale, Hoehn and Yahr (caregiver version), a perceived Self-Efficacy Scale developed previously for use with PD caregivers, and questions related to both patient and caregiver characteristics.

Caregivers reported more loneliness than all similar normative groups except Alzheimer caregivers (P<0.001 to P=0.011). Hierarchical regression analyses were used to determine whether patient or caregiver characteristics were more predictive of loneliness. Results indicated that patient variables accounted for only 12% of the variance in loneliness, whereas caregiver variables accounted for an additional 46% of the variance (P<0.01). Among the significant individual caregiver predictors of greater loneliness were less education, lower perceived self-efficacy (both P<0.05) and poorer physical health (P<0.01). It was also found that persons attending caregiver support groups reported less loneliness (P<0.05) and more perceived support (P<0.05) than those not attending support groups.

Because loneliness was significantly predicted by caregiver rather than patient variables, it is possible that strategic interventions for caregivers could ameliorate loneliness.

Issue 32 Autumn 2009

Deep brain stimulation A decision tool to support appropriate referral for deep brain stimulation in Parkinson's disease Moro E et al (2009) Journal of Neurology; 256(1):83-88 BACKGROUND AND OBJECTIVE : Although Deep Brain Stimulation (DBS) has been proven to be an effective treatment for patients with advanced Parkinson's disease (PD), it may be difficult for general neurologists to identify appropriate candidates for this procedure. We developed an electronic decision tool that can assist neurologists in deciding which PD patients should be referred for DBS consideration. METHODS : Using the RAND/ UCLA Appropriateness Method, an international expert panel assessed the appropriateness of referral for 972 theoretical patient profiles. Panel results were embedded in an electronic decision support tool which displays the panel statement on referral (appropriate, inappropriate and uncertain) after completion of the patient profile. RESULTS : Referral was considered appropriate for 33 % of the theoretical profiles. Logistic regression showed excellent internal consistency of the ratings (predictive value 92 %).

Symptom severity (OFF-symptoms, dyskinesias, refractory tremor) and PD duration were positively associated with the panel judgment that referral is appropriate. Presence of levodopa-resistant axial symptoms, age >/= 70 years and presence of cognitive impairment showed the strongest negative impact. CONCLUSIONS : The RAND/UCLA method proved to be useful in determining the appropriate criteria for DBS referral. Validity and applicability of the decision tool (accessible via http://test.stimulus-dbs.org) in clinical practice need to be further determined.

Spinal cord stimulation restores locomotion in animal models of Parkinson's disease Fuentes R et al (2009) Science; 323(5921):1578-1582 Dopamine replacement therapy is useful for treating motor symptoms in the early phase of Parkinson's disease, but it is less effective in the long term. Electrical deep-brain stimulation is a valuable complement to pharmacological treatment but involves a highly invasive surgical procedure.

We found that epidural electrical stimulation of the dorsal columns in the spinal cord restores locomotion in both acute pharmacologically induced dopamine-depleted mice and in chronic 6-hydroxydopamine-lesioned rats. The functional recovery was paralleled by a disruption of aberrant lowfrequency synchronous corticostriatal oscillations, leading to the emergence of neuronal activity patterns that resemble the state normally preceding spontaneous initiation of locomotion. We propose that dorsal column stimulation might become an efficient and less invasive alternative for treatment of Parkinson's disease in the future.

Parkinsonâ&#x20AC;&#x2122;s News 35

Research update Bilateral deep brain stimulation vs best medical therapy for patients with advanced Parkinson disease: a randomized controlled trial Weaver FM et al (2009) Journal of the American Medical Association; 301(1):63-73 CONTEXT: Deep brain stimulation is an accepted treatment for advanced Parkinson disease (PD), although there are few randomized trials comparing treatments, and most studies exclude older patients. OBJECTIVE: To compare 6-month outcomes for patients with PD who received deep brain stimulation or best medical therapy. DESIGN, SETTING, AND PATIENTS: Randomized controlled trial of patients who received either deep brain stimulation or best medical therapy, stratified by study site and patient age (< 70 years vs > or = 70 years) at 7 Veterans Affairs and 6 university hospitals between May 2002 and October 2005. A total of 255 patients with PD (Hoehn and Yahr stage > or = 2 while not taking medications) were enrolled; 25% were aged 70 years or older. The final 6-month follow-up visit occurred in May 2006. INTERVENTION: Bilateral deep brain stimulation of the subthalamic nucleus (n = 60) or globus pallidus (n = 61). Patients receiving best medical therapy (n = 134) were actively managed by movement disorder neurologists. MAIN OUTCOME MEASURES: The primary outcome was time spent in the "on" state (good motor control with unimpeded motor function) without troubling dyskinesia, using motor diaries. Other outcomes included motor function, quality of life, neurocognitive function, and adverse events. RESULTS: Patients who received deep brain stimulation gained a mean of 4.6 h/d of on time without troubling dyskinesia compared with 0 h/d for patients who received best medical therapy (between group mean difference, 4.5 h/d [95% CI, 3.75.4 h/d]; P < .001). Motor function improved significantly (P < .001) with deep brain stimulation vs best medical therapy, such that 71% of deep brain stimulation patients and 32% of best medical therapy patients experienced clinically meaningful motor function improvements (> or = 5 points). Compared with the best medical therapy group, the deep brain stimulation group experienced significant improvements in the summary measure of quality of life and on 7 of 8 PD quality-of-life scores (P < .001). Neurocognitive testing revealed small decrements in some areas of information processing for patients receiving deep brain stimulation vs best medical therapy.

At least 1 serious adverse event occurred in 49 deep brain stimulation patients and 15 best medical therapy patients (P < .001), including 39 adverse events related to the surgical procedure and 1 death secondary to cerebral hemorrhage.

CONCLUSION: In this randomized controlled trial of patients with advanced PD, deep brain stimulation was more effective than best medical therapy in improving on time without troubling dyskinesias, motor function, and quality of life at 6 months, but was associated with an increased risk of serious adverse events.

36 Parkinsonâ&#x20AC;&#x2122;s News

Stem cells Clinical pattern and risk factors for dyskinesias following fetal nigral transplantation in Parkinson's disease: a double blind video-based analysis Olanow CW et al (2009) Movement Disorders; 24(3):336343 The objective of this study is to assess dyskinesias in 34 Parkinson's disease patients randomized to receive bilateral fetal nigral transplantation with 4 donors per side (12), 1 donor per side (11), or placebo (11). Videotape recordings were performed at the baseline, 3, 6, 12, 18, and 24 month visits during the "practically defined off" (12 hours after last evening dopaminergic therapy) and "best on" (best response following morning dopaminergic therapy) states. Videotapes were analyzed in random order by a blinded investigator. Dyskinesias during "best on" (on-medication dyskinesia) were observed in all, but 1 patient at baseline, and in all patients at each subsequent visit. There were no differences between groups.

No patient had dyskinesia at baseline in "practically-defined off" ("off-medication" dyskinesia). Following transplantation, off-medication dyskinesia was observed in 13 of 23 patients, but not in any patient in the placebo group (P = 0.019). There was no difference in dyskinesia score between patients in the 1 and 4 donor groups. On-medication dyskinesias were typically generalized and choreiform, whereas off-medication dyskinesias were usually repetitive, stereotypic movements in the lower extremities with residual Parkinsonism in other body regions. Off-medication dyskinesias are common following transplantation and may represent a prolonged form of diphasic dyskinesias. (c) 2008 Movement Disorder Society.

Parkinson's disease patient-derived induced pluripotent stem cells free of viral reprogramming factors Soldner F et al (2009) Cell; 136(5):964-977 Induced pluripotent stem cells (iPSCs) derived from somatic cells of patients represent a powerful tool for biomedical research and may provide a source for replacement therapies. However, the use of viruses encoding the reprogramming factors represents a major limitation of the current technology since even low vector expression may alter the differentiation potential of the iPSCs or induce malignant transformation. Here, we show that fibroblasts from five patients with idiopathic Parkinson's disease can be efficiently reprogrammed and subsequently differentiated into dopaminergic neurons. Moreover, we derived hiPSCs free of reprogramming factors using Cre-recombinase excisable viruses. Factor-free hiPSCs maintain a pluripotent state and show a global gene expression profile, more closely related to hESCs than to hiPSCs carrying the transgenes. Our results indicate that residual transgene expression in virus-carrying hiPSCs can affect their molecular characteristics and that factor-free hiPSCs therefore represent a more suitable source of cells for modeling of human disease.

Issue 32 Autumn 2009

Research update When and how should treatment be started in Parkinson disease?

Lang AE (2009) Neurology; 72(7 Suppl):S39-43 The questions of when and how to start treatment for Parkinson disease (PD) remain extremely challenging. A variety of treatment- and patient-related factors must be taken into account when making these decisions. Ideally, neuroprotective therapy would be started at the time of diagnosis. However, no treatment has been unequivocally shown to modify disease progression, and those that have some evidence for this effect all provide confounding symptomatic benefits, which may also be important to supplement faltering compensatory mechanisms within the basal ganglia. Dopamine agonists are clearly associated with a reduction in the incidence of dyskinesias in the early years, but it is not certain that this translates into long-term benefit. In addition, a number of nonmotor side effects are more frequently associated with dopamine agonists than with levodopa. This review will highlight these and other issues that must be considered when deciding on the early treatment of PD.

Dopamine agonists Long-term Effect of Initiating Pramipexole vs Levodopa in Early Parkinson Disease Parkinson Study Group CALM Cohort Investigators (2009) Archives of Neurology; Epub ahead of print OBJECTIVE: To compare the long-term outcomes of subjects initially treated with pramipexole dihydrochloride with those of subjects initially treated with levodopa in the Comparison of the Agonist Pramipexole With Levodopa on Motor Complications of Parkinson's Disease (CALMPD) trial. DESIGN: Up to 2 years of open extended follow-up of the CALM-PD subjects. SETTING: Academic movement disorders clinics at 22 sites in the United States and Canada.Patients Patients with early Parkinson disease (N = 301) who required dopaminergic therapy to treat emerging disability were enrolled between October 1996 and August 1997, a subset of whom consented to extended follow-up until August 2003 (n = 222).Intervention Subjects were randomized to receive initial treatment with either pramipexole (n = 151) or levodopa (n = 150).

Investigators were permitted to add open-label levodopa or other antiparkinsonian medications to treat ongoing or emerging disability. MAIN OUTCOME MEASURES: The primary outcome variable was the time-weighted average of self-reported disability scores in the "on" and "off" states as measured by the Schwab and England Activities of Daily Living Scale at the final visit. Secondary outcomes included the Unified Parkinson's Disease Rating Scale score, the presence and severity of dopaminergic motor complications, quality-of-life scale scores, Geriatric Depression Scale score, Epworth Sleepiness Scale score, and adverse events. RESULTS: After a mean (SD) followIssue 32 Autumn 2009

up of 6.0 (0.2) years, mean (SD) self-reported weighted Schwab and England Activities of Daily Living Scale scores were similar in the initial pramipexole (79.9 [16.2]) and initial levodopa (82.5 [14.6]) groups (P = .19). Dopaminergic motor complications (wearing off, on-off effects, or dyskinesias) were more common in the initial levodopa group (68.4%) than in the initial pramipexole group (50.0%) (P = .002), although disabling dyskinesias were uncommon in both groups. The mean (SD) Epworth Sleepiness Scale score was significantly higher in the initial pramipexole group (11.3 [5.8]) than in the initial levodopa group (8.6 [4.7]) (P < .001). Mean (SD) changes from baseline in the total Unified Parkinson's Disease Rating Scale score did not significantly differ between the initial pramipexole (2.4 [17.4]) and initial levodopa (0.5 [17.1]) groups (P = .11). CONCLUSIONS: The policies of initial pramipexole and initial levodopa use followed by open-label levodopa use resulted in similar selfreported disability 6 years after randomization. Persistent differences favoring initial pramipexole were seen in the rates of dopaminergic motor complications, with less severe somnolence favoring initial levodopa.Trial Registration clinicaltrials.gov Identifier: NCT00804479Published online March 9, 2009 (doi:10.1001/archneurol.2009.32).

Levodopa Patient profile, indications, efficacy and safety of duodenal levodopa infusion in advanced Parkinson's Devos D et al (2009) Movement Disorders; Epub ahead of print The studies of duodenal infusion of a levodopa on small groups of parkinsonian patients have reported beneficial effects on motor complications. However, little is known about the patient profile and indications for duodenal levodopa infusion. The purpose of this study is to exhaustively investigate the clinical characteristics of the population and indication, efficacy and tolerability of duodenal levodopa infusion in natural care settings. Of the 102 patients treated with duodenal levodopa infusion since 2003, 91 were enrolled in a multicentre retrospective study. The mean age was 72.7 years, with average disease duration of 17 years. Patients were at advanced stage: 91% had gait disorders, 65% had visual hallucinations, and 50% were demented (MMSE: 23). Duodenal levodopa infusion was the last line of treatment for motor complications in 98% of the patients, due to failure of or contraindication for apomorphine pump and neurosurgical treatments. Longterm treatment was observed by 73% of the population. Of these, >90% reported an improvement in motor fluctuations, quality of life, and autonomy. There were few severe adverse events. Technical problems were commonplace. Duodenal levodopa infusion seems to be an effective last-line therapy for motor complications in Parkinson's disease. Hence, technical improvements and earlier introduction should be considered. (c) 2008 Movement Disorder Society.

Parkinsonâ&#x20AC;&#x2122;s News 37

Research update

Drug update Adding a dopamine agonist to preexisting levodopa therapy vs. levodopa therapy alone in advanced Parkinson's disease: a meta analysis Talati R et al (2009) International Journal of Clinical Practice; Epub ahead of print

New drugs in development

Summary Background: To perform a meta analysis of randomised placebo-controlled trials evaluating the use of dopamine agonist (DA) or placebo to preexisting levodopa therapy for the treatment of advanced Parkinson's disease (PD). We focused on clinically important efficacy [Unified Parkinson's Disease Rating Scale (UPDRS) activities of daily living (ADL) and motor scores as well as change in 'off' time and levodopa dose] and safety outcomes (withdrawal because of adverse drug events (ADEs), dyskinesias, hallucinations and mortality). Methods: A systematic literature search was performed between January 1990 and July 2007. The primary outcome measures assessed were the reduction in scores of Unified Parkinson's Disease Rating Scale (UPDRS) activities of daily living (ADL) and motor scores as well as reduction in 'off' time and reductions in levodopa dose from baseline. Safety end-points were also evaluated. Results: A total of 15 trials (n = 4380 subjects) were included in the meta analysis.

Adjunctive DA use resulted in greater improvement as measured by the UPDRS ADL [weighted mean difference (WMD) -2.20, 95% confidence interval (CI) -2.64 to -1.76; p < 0.0001] and motor score reduction (WMD -5.56, 95% CI -6.82 to -4.31; p < 0.0001) as well as reduction in 'off' time measured in hours/day (WMD -1.20, 95% CI -1.78 to -0.62; p < 0.0001) and reduction in levodopa dose (WMD -128.5 mg, 95% CI -175.0 to -82.1; p < 0.0001) vs. placebo.

Incidence of dyskinesia and hallucinations was higher with DAs [odds ratio (OR) 3.27, 95% CI 2.65-4.03; p < 0.0001] and (OR 3.34, 95% CI 2.44-4.58; p < 0.0001). Non-ergot DAs were qualitatively better, although both ergot and nonergot DAs showed statistically significant improvements in all UPDRS scores. Conclusion: Adjunctive DA use to levodopa is superior to levodopa alone in reducing PD symptoms in patients not controlled with monotherapy. DAs seem especially useful amongst PD patients with wearingoff phenomenon from levodopa therapy, but can cause some adverse events.

A controlled trial of antidepressants in patients with Parkinson disease and depression Menza M et al (2009) Neurology; 72(10):886-892

Antidepressants

BACKGROUND: Parkinson disease (PD) is a common neurodegenerative disease affecting up to 1 million individuals in the United States. Depression affects up to 50% of these patients and is associated with a variety of poor outcomes for patients and their families. Despite this, there are few evidence-based data to guide clinical care. METHODS: An NIH-funded, randomized, controlled trial of paroxetine CR, nortriptyline, and placebo in 52 patients with PD and depression. The primary outcomes were the change in the Hamilton Depression Rating Scale (HAM-D) and the percentage of depression responders at 8 weeks. RESULTS: Nortriptyline was superior to placebo for the change in HAM-D (p < 0.002); paroxetine CR was not. There was a trend for superiority of nortriptyline over paroxetine CR at 8 weeks (p < 0.079). Response rates favored nortriptyline (p = 0.024): nortriptyline 53%, paroxetine CR 11%, placebo 24%. In planned contrasts of response rates, nortriptyline was superior to paroxetine CR (p = 0.034). Nortriptyline was also superior to placebo in many of the secondary outcomes, including sleep, anxiety, and social functioning, while paroxetine CR was not. Both active drug treatments were well tolerated. CONCLUSIONS: Though relatively modest in size, this is the largest placebocontrolled trial done to date in patients with Parkinson disease (PD) and depression. Nortriptyline was efficacious in the treatment of depression and paroxetine CR was not.

When compared directly, nortriptyline produced significantly more responders than did paroxetine CR. The trial suggests that depression in patients with PD is responsive to treatment and raises questions about the relative efficacy of dual reuptake inhibitors and selective serotonin reuptake inhibitors.

Glutathione Randomized, double-blind, pilot evaluation of intravenous glutathione in Parkinson's disease Hauser RA et al (2009) Movement Disorders; Epub ahead of print The objective of this study was to evaluate the safety, tolerability, and preliminary efficacy of intravenous glutathione in Parkinson's disease (PD) patients. This was a randomized, placebo-controlled, double-blind, pilot trial in subjects with PD whose motor symptoms were

38 Parkinsonâ&#x20AC;&#x2122;s News

Issue 32 Autumn 2009

Research update not adequately controlled with their current medication regimen. Subjects were randomly assigned to receive intravenous glutathione 1,400 mg or placebo administered three times a week for 4 weeks. Twenty-one subjects were randomly assigned, 11 to glutathione and 10 to placebo.

One subject who was assigned to glutathione withdrew from the study for personal reasons prior to undergoing any postrandomization efficacy assessments. Glutathione was well tolerated and there were no withdrawals because of adverse events in either group. Reported adverse events were similar in the two groups. There were no significant differences in changes in Unified Parkinson's Disease Rating Scale (UPDRS) scores. Over the 4 weeks of study medication administration, UPDRS ADL + motor scores improved by a mean of 2.8 units more in the glutathione group (P = 0.32), and over the subsequent 8 weeks worsened by a mean of 3.5 units more in the glutathione group (P = 0.54). Glutathione was well tolerated and no safety concerns were identified. Preliminary efficacy data suggest the possibility of a mild symptomatic effect, but this remains to be evaluated in a larger study. (c) 2009 Movement Disorder Society.

Anti-inflammatories Nimodipine protects dopaminergic neurons against inflammation-mediated degeneration through inhibition of microglial activation Li Y et al (2009) Neuropharmacology; 56(3):580-589

range of disorders especially some central nervous system (CNS) disorders. In this study, we investigated whether nimodipine is neuroprotective to inflammation-mediated neurodegenerative diseases. Pretreatment with nimodipine reduced the degeneration of dopaminergic (DA) neurons induced by LPS in mesencephalic neuron-glia cultures in a dose-dependent manner. The neuroprotective effect of nimodipine was attributed to the inhibition of microglial activation, since nimodipine significantly inhibited the production of nitric oxide (NO), tumor necrosis factor-alpha (TNF-alpha), interleukin-1beta (IL-1beta) and prostaglandin E(2) (PGE(2)) from LPS-stimulated microglia. Moreover, nimodipine was not neuroprotective to 1-methyi-4phenylpyridinium (MPP(+))-induced DA neurotoxicity in the absence of microglia. Mechanistic study showed that nimodipine failed to protect the degeneration of neurons in neuron-glia cultures from mice lacking functional NADPH oxidase (PHOX), a key enzyme for extracellular superoxide production in immune cells. Taken together these results suggest that nimodipine is protective to DA neurodegeneration via inhibiting the microglial-mediated oxidative stress and inflammatory response. Thus, nimodipine may be a potential therapeutic agent for the treatment of inflammation-related neurodegenerative disorders such as Parkinson's disease.

Nimodipine, a calcium channel blocker, has been used mainly in the therapy of cardiovascular diseases. Recently, its indications have been extended experimentally to a wider

All items aim to provide as much information as possible but, since some information involves personal judgement, their publication does not mean that the Parkinson’s Disease Society (PDS) necessarily endorses them. While due care is taken to ensure the content of Parkinson’s News is accurate, the publisher and printer cannot accept liability for errors or omissions. While every care is taken of text and photographs submitted, the PDS accepts no responsibility for any loss or damage, whatever the cause. The PDS does not endorse any products mentioned in this magazine.

© Parkinson’s Disease Society of the United Kingdom (2008) Charity registered in England and Wales No. 258197 and in Scotland No. SC037554 A company limited by guarantee. Registered No. 948776 Registered Office: 215 Vauxhall Bridge Road, London SW1V 1EJ www.parkinsons.org.uk pds helpline: 0808 800 0303 enquiries@parkinsons.org.uk

Issue 32 Autumn 2009

Parkinson’s News 39

Local support services for Parkinson’s The Parkinson’s Disease Society has a UK-wide network of Information and Support Workers (ISWs) Our locally-based ISWs give information, advice and advocacy to people with Parkinson’s, their families and carers.

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ISWs link people affected by the condition to local health and social care services and the PDS. 3

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How professionals can get involved

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Contact your local ISW for information about Parkinson’s  Sign post people with Parkinson’s, families and carers to their local ISW service  Tell your colleagues about the ISW service 

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The following managers can provide details of ISWs in your region

Region

Information and Support Manager

Telephone

E-mail

1. Scotland

Len Ironside

0844 225 3722

lironside@parkinsons.org.uk

2. Wales

Cathy Probyn

0844 225 3712

cprobyn@parkinsons.org.uk

3. Northern Ireland

Catherine Murnin

0844 225 3682

cmurnin@parkinsons.org.uk.

4. North East

Alex Martin

0844 225 3602

amartin@parkinsons.org.uk

5. Yorkshire & Humberside

Jayne Riggall

0844 225 3632

jriggall@parkinsons.org.uk

6. North West

Jill Strickland

0844 225 3652

jstrickland@parkinsons.org.uk

7. Eastern

Julie Woodley

0844 225 3612

jwoodley@parkinsons.org.uk

8. East Midlands

Laura Bowey

0844 225 3622

lbowey@parkinsons.org.uk

9. West Midlands

Cheryl Ford

0844 225 3642

cford@parkinsons.org.uk

10. London

Julia Keogh

0844 225 3703

jkeogh@parkinsons.org.uk

11. South

Abbi Hayden

0844 225 3672

ahayden@parkinsons.org.uk

12. South East

Fell Duncan

0844 225 3662

fduncan@parkinsons.org.uk

13. South West & Channel Islands Jayne Dunn

0844 225 3692

jdunn@parkinsons.org.uk B306