Horsham District Older Peoples Forum



If  you or your organisation or company wish to consult older people in the Horsham District, please email us at horshamolderpeoplesforum@gmail.com

West Sussex County Council Consultation Hub - have your say   

This WSCC site will help you find and participate in consultations that interest you. Register to join the 'e panel' here


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Proposed vision and strategy for adult social care...

West Sussex County Council has unveiled its draft vision and strategy for adult social care for 2019 to 2021 and is keen to hear residents’ views.

This proposal sets out the journey the council will be taking, working closely with local residents and other partners across the county to support people to live healthy and independent lives, while keeping the most vulnerable safe.

It sets out an ambitious set of priorities for the next three years which include:

 Implementing a community-led model of support;

Maximising independence for older people, people with learning disabilities, autism, physical and sensory disabilities and those with mental health issues;

Supporting families and carers; and

Working towards the requirement to achieve health and social care integration by 2020.

The consultation runs until Friday 14 December 2018 and you can share your views by visiting www.westsussex.gov.uk/adultsvision


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Parkinsons Research Project

University College London - Predict-PD - Barts & the London School of Medicine & Dentistry

REC Reference Number: 10/H0716/85 PREDICT-PD

Participant Date 18th June 2018

Please read all the information contained in the Predict-PD webpage
in full before agreeing to participate. If you have further questions, please contact them by email or telephone 

Researchers
Dr Alastair Noyce, Prof Anette Schrag, Mr Jonathan Bestwick, Prof John Hardy, Dr Richard Rees, Dr Anna Nagy, Prof Andrew Lees, Prof Gavin Giovannoni


Update December 2018

The PREDICT-PD study is in full swing this year. We are grateful for your ongoing support. Over the last couple of months, about 850 people have completed the online tests and we are continuing to see participants at home and at our research centres.

 If you have not yet had a chance to complete the tests, then please visit our lovely new website via this link predictpd.com. Note, you may be required to reset your password and it takes around 20-30 minutes. Do let us know if you encounter any problems along the way. We are excited to tell you that for the first since 2011 we are recruiting new participants. If you know anyone over the age of 60 years old, who lives in the UK and might like to take part, please encourage them to register with the study or get in touch via support@predictpd.com.  

Thank you once again, The PREDICT-PD Team


About Parkinson’s

What is Parkinson’s?

Parkinson's is a progressive neurological condition. One person in every 500 has Parkinson's. That's about 120,000 people in the UK. Most people who get Parkinson's are aged 50 or over but younger people can get it too. One in 20 is under the age of 40 when first diagnosed. 

People with Parkinson's don't have enough of a chemical called dopamine because some relevant nerve cells in their brain have died. 

Without dopamine, people can find that their movements become slower so it takes longer to do things. The loss of nerve cells in the brain causes the symptoms of Parkinson's to appear, which include tremor, rigidity and slowness of movement.

There's currently no cure for Parkinson's and we don't yet know why people get the condition. How is Parkinson’s diagnosed? At present, the diagnosis of Parkinson’s is made clinically. This means that the doctor examines the person and takes a detailed history of their symptoms. 

Sometimes brain scans are used for uncertain cases but there is currently no conclusive test for Parkinson’s. The early signs of Parkinson’s may include problems with movement like tremor, stiffness, slowness of movement, difficulties with handwriting and loss of facial expression. 

Other symptoms, not related to movement, can also be present like loss of sense of smell, depression, constipation and sleep problems.

Why do we want to diagnose Parkinson’s earlier?

One reason why we don’t yet have a cure for Parkinson’s is because the movement symptoms of the condition only appear once 70-80% of the nerve cells have already been lost.

The nerve cells start dying many years before symptoms appear but we don’t know enough yet about these early stages. If we could identify people early – before the movement symptoms appear – we would be in the best possible position to slow, stop or even reverse Parkinson’s.

How could we identify people at risk of Parkinson’s before the symptoms appear?

Research suggests that problems including anxiety, depression, constipation and loss of sense of smell may occur up to 20 years before the movement problems of Parkinson's appear. Many older people probably experience some of these problems at some stage. But finding people who experience several of these issues together may help us identify people at high risk of Parkinson’s.

About PREDICT-PD


What is the PREDICT-PD project?

PREDICT-PD is an innovative project that aims to identify people at high risk of Parkinson’s before the symptoms appear. 

We are using a set of simple online tests that screen for factors linked to an increased risk of Parkinson’s. We want to know whether a person’s combined score in these tests can tell us about their risk of developing Parkinson’s.

Will your project identify people who will get Parkinson’s?

No. Although we have some idea of what the very early stages of Parkinson’s might look like, we don’t know yet if our tests can accurately predict people at high risk of Parkinson’s.

This study will help us refine the tests so that we can determine risk of Parkinson’s with the best possible degree of accuracy. If we can predict Parkinson’s, we hope to one day have treatments for those at high risk that could slow or prevent the condition progressing.

What’s special about the PREDICT-PD project?

PREDICT-PD is innovative because it is conducted almost entirely online. This means participants don’t even need to leave their homes to take part, and we can process lots of information quickly, cheaply and efficiently.

We hope that using the Internet will mean more people take part and potentially benefit from its results. PREDICT-PD is also unique because it focuses on the earliest known symptoms of Parkinson’s.

Taking part in PREDICT-PD

Who can take part in the study?

We are looking for healthy people aged between 60 and 80 years, who have access to the Internet, and do not have a current diagnosis of Parkinson’s. People with a family history of Parkinson’s are also encouraged to participate.

Who cannot take part in the study?

1. People who have been diagnosed with Parkinson's or other movement disorders, dementia, stroke or motor neurone disease.

2. Certain drugs can contribute to or cause Parkinson’s-like symptoms. We may exclude some participants if we think their previous or current medication may affect the results of the study.

Are there any exceptions to these criteria?

Yes. The research team will approach some specific groups so that they can act as comparisons for the online, ‘self-referring’ PREDICT-PD participants. Some groups of individuals are at increased risk of Parkinson’s because they have another pre-existing medical condition.

 Examples of patient groups at elevated future risk of Parkinson’s include: an uncommon form of sleep disorder known as RBD (REM-Sleep Behaviour Disorder); late-onset mood disorders such as anxiety or depression; and individuals with adult onset smell loss and no clearly identifiable cause. Up to 70 individuals will be recruited for each of these three special groups. Participants with unexplained smell loss will come from dedicated smell and taste clinics, from the Department of Mental Health for late onset mood disorders, and epilepsy and sleep medicine clinics for RBD patients. 

Finally, an additional positive control group of patients with established Parkinson’s are to be recruited from UCL Partners’ hospitals. All positive control groups will undergo the same investigations as regular ‘self-referring’ PREDICT-PD participants including: the online screening questionnaire, keyboard tapping test, smell testing, neurological examination, and perhaps blood/urine/saliva collection.

Do I have to take part in the study?

No. There is no obligation to take part in the study, and the decision to participate rests entirely with you.

You also have the right to withdraw from the study at any point, and are not obliged to provide a reason.

If you do choose to participate, please read the information on the website pages carefully. You will then be asked to read and complete a consent page before registering on the website.website

I’d like to take part. What do I have to do?

First, you will need to register with the PREDICT-PD website

If you have participated in previous years you will already be registered.


Next you’ll be asked to complete an online questionnaire that collects information on various medical and lifestyle factors that may influence risk of Parkinson’s. 

This questionnaire takes about 30 minutes to complete. After the questionnaire, you will be asked to take the keyboard tap test – a simple test on the PREDICT-PD website. This is not a typing test. The test helps us measure the accuracy and speed of movement in your arms. After the tapping test there are some brief mental and memory tests.

Participants will be sent a smell test through the post in the future. The smell test contains 4-5 ‘scratch and sniff’ odours and full instructions on how to complete it. You fill in your answers to the smell test on the PREDICT-PD website (you will need to log in again). Participants that get lower scores on the initial smell test may be sent a more detailed follow-up smell test containing 40 items. A sample of saliva for genetic testing may also be requested. Instructions will be enclosed on how to collect saliva and return the samples along with the completed smell tests.

Full information here

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