What is advocacy?

Tom Isaacs explains the psychological journey to involvement in Parkinson’s research.

The sections below explain more fully each level of his advocacy pyramid.

Introduction

 

Diagnosis

The pyramid shows the starting point as being the diagnosis, although of course many of the symptoms will have been apparent before this. I think, however, that diagnosis is when the psychological journey starts because there is a name for your condition and you have some concept of what you have in store. 

Shock, Anger, Denial

This stage is one I think everyone experiences. In fact, I would say many, if not most people with Parkinson’s do not actually get beyond this stage. The shock, anger, denial or S.A.D phase is one where we are introspective. We build protective barriers around ourselves and nurse the wounds, not so much of the physical effects of the condition, but more of the mental effects. At this stage, the condition is all about us, and to a certain extent we are selfish – no one else understands what we are going through.

Communication

This is the key moment in the transition from misery to happiness. Slowly but surely, you begin to tell people close to you about how you feel. You begin to realise, perhaps subconsciously, that the only reason people don’t understand what you are going through is because you have not communicated it to them. You start to understand that communication is quite a good therapy – a problem shared is a problem halved. Furthermore, you realise that people close to you and even those not so close are prepared to listen and be sympathetic without in any way pitying you or treating you any different to the way they did before. In fact it is the very act of communicating with friends and family that ensures that they do treat you the same.

Acceptance, Education and Consolidation

Another key moment. You begin to accept Parkinson’s as being part of who you are. You are no longer the person you once were and you accept that your life has changed irretrievably. You start to alter your ambitions for the future and tailor them so that they take your Parkinson’s into account. You are adapting to the new you and are beginning to concentrate on the positives of this and are more concerned with the things you can still do rather than things that Parkinson’s has interfered with.

Gradually you start to face the future with Parkinson’s; learning a little bit more about the condition; speaking in more constructive terms with your consultant and bit by bit becoming more accustomed to the idea that you have a long-term degenerative neurological condition.

 

Engagement and Participation

This is the stage in which Parkinson’s becomes a wider issue than simply you as an individual. You start talking to other people, comparing stories, listening to their experiences. You begin to look beyond your own personal fate and realise that your experiences might actually help others.

Participation is the stage when you might join a group or take an interest in a particular aspect of the condition such as looking into the prospect of new treatments in the pipeline or contributing to a Parkinson’s group or forum. You realise that by contributing constructively to the Parkinson’s community, you are not only helping other people but you are helping yourself feel better about “you”.

Advocacy, Influence and Cure/Change

Now you’re really rockin’! You are becoming known as a force in the Parkinson’s community. People are listening to what you have to say and are grateful for your input. You are becoming busy in the business of Parkinson’s and this gives you quite a buzz.

You and your colleagues are part of a group who are actually making a difference in the world of Parkinson’s. Your insight, passion, urgency, focus, fundraising, empathy and participation are having a direct influence on the future treatment and care of people with Parkinson’s.

This is why Parkinson’s Movement was formed.

And with your help, this is what the Parkinson’s Movement and The Cure Parkinson’s Trust together hope to achieve.

 

Final Word

 

General information about what you can do to help advance research:

Tom Isaacs had a vision that PwPs can and should support research through advocacy. Explore the toggles below to find out more about some of the ways of getting involved in clinical trials, research funding,  media & awareness, regulation, industry & ethics.

Clinical Trials

“The only way we can develop new treatments is to ensure rigorous testing in clinical trials.” 45 per cent of all clinical trials are delayed because of difficulties enrolling participants. Reasons for this include research not being offered, the relevance of the research not being clear, and misconceptions of what is involved. If we are to develop potential cures for Parkinson’s, this needs to changeNot all studies are interventional trials.  Clinical studies fall into the following main categories:

  • Trials of new devices or scales to better measure Parkinson’s
  • Trials of new devices or tools to manage different symptoms
  • Longitudinal studies that follow you/your Parkinson’s over a number of years and provide insights into best treatment and the nature of the disease
  • Market research studies to understand the impact of Parkinson’s
  • Trials that may help develop diagnostics e.g. eye scanning or providing a blood sample
  • Trials of genetic data sets (requiring provision of genetic samples)
  • Trials of new therapeutic treatments – these are interventional: Disease modifying, Symptomatic

However, there are so many things that we/you can do to help:

  1. Supporting a clinical trial steering committee as a lay representative
  2. Supporting a clinical trial team with their patient communication strategy and editing patient information leaflets and trial update newsletters
  3. Supporting a clinical trial team in identifying what outcome measures to use
  4. Supporting a clinical trial team in the design of the trial and the assessments process
  5. Volunteering to take part in a clinical study
Research Funding
 

“We must recognise that although money is crucial to enable progress, teamwork is the only thing that can realise it.” PwP can support funding by working with researchers to leverage funds from third parties for Parkinson’s research/curative projects. The voice of PwP adds credibility and clarifies the need for and the relevance of the project.  Involving people with Parkinson’s in funding pitches provides context and ensures the relevance to the wider Parkinson’s community. Many government funders insist that people with Parkinson’s are included in applications and we need to ensure that these contributions are valuable to all parties. This is called patient and public involvement:

Click here to find out more information

 

Examples:  In August 2017 CPT hosted a meeting for eight Advocates to help shape a new trial for Exenatide.  The group debated outcomes and measures, recruitment issues, the duration of the placebo arm biological samples to be collected and off assessments, providing valuable insights.

Media and Awareness
 

“One of the greatest things about Coastin’ was that PR for Tom meant PR for Parkinson’s. While the walk continued they were one and the same. I heard Q’s voice in my head, “You’re a media tart.” Tom Isaacs Ways of communicating:

  • Social media to motivate people to take part and take action
  • Social media to link like minded individuals
  • Social media to spread surveys/calls to action
  • Social media to send simple key messages

Ways to take part:

  • Blogging
  • Completing surveys
  • Writing reports from meetings you attend
  • Interviewing with Press, TV and Radio about the need for research into a cure
  • Commentaries on issues around the agreed advocacy theme
  • Films / interviews with researchers “How can we help you?”
Regulation, Industry and Ethics
 

“Patients can engage with regulators to make the case for fast tracking therapies which have particular potential and ensuring that the payer understands the real impact of new treatments on quality of life.” Tom Isaacs We need to encourage pharmaceutical companies and researchers working in the field of Parkinson’s to call on PwP’s to explain and describe real therapeutic needs rather than those perceived by others. This should be an on going relationship throughout the development process. Formal or informal gatherings between academic scientists, pharma representatives, PwPs where stakeholders could provide an opportunity for PwP’s to describe what PD is like, helping to promote the needs of PwPs. When developing novel or repurposed drugs, we must ensure that industry hears the patient voice, including the anecdotal experiences of those on the trials.  This is particularly important as the outcome measures are so imprecise.  PwP hat have not been participants can facilitate this dialogue by helping to write a survey to capture their experiences and then communicating the findings both to industry and to the participants. Engaging with regulators to make the case for fast tracking therapies which have particular potential and ensuring that the payer understands the real impact on quality of life and the benefit of the new treatment and how it relates to existing medication options.  Regulators also need to take into consideration that response to medication may be different in different people.

  • Identify all the relevant groups and panels where advocacy can influence change
  • Lobby to seek PwP representation on these
  • Ask Advocates to report back so others can learn from process

Example: David Murray, an advocate from Wales has represented The Cure Parkinson’s Trust with the Neurological Alliance in Wales for the last 5 years.  David has also influenced research bids with Cardiff University.  

 

Tom Isaacs

Tom Isaacs was a chartered surveyor working as a director of a London property company when he was diagnosed with Parkinson’s disease in 1995. He had a wide circle of friends, a love of travel, adventure, singing and parties and a wicked sense of humour. He was just 26. At the time, scientists and doctors accepted without question that Parkinson’s was an incurable condition. They strove to alleviate the symptoms but even on that front progress was woefully slow. Isaacs simply refused to accept this conclusion. He started to ask the question “Why?”, determined that one day he would be able to describe himself as someone who used to have Parkinson’s. Sadly, that was not to be, but his work in the intervening years between his diagnosis and his death on 31st May 2017 at the age of 49 has brought this objective tantalisingly close for others with the condition. Thomas William Isaacs was born on 2nd April 1968, the third and youngest child in a close-knit family. His father was a successful London solicitor who shared Tom’s acute sense of humour and ready wit. He described his mother as the principal influence of his life. From an early age he learned to accept some of the restrictions of health problems, being diagnosed as a coeliac while still a toddler. He later described as a turning point a dream he had some 2½ years after he was diagnosed. In the dream he took over a workman’s pneumatic drill and found that with his shaking hands he could achieve more than others: he woke determined to use his Parkinson’s to achieve more in life than he could have done without it. In April 2002 he set out to walk round the coastline of Britain, a distance of 4,500 miles which he resolved to complete in 365 days. This would have been a challenge for a fit person: for a man who sometimes had difficulty in walking across a room it appeared absurd. Yet he not only completed the walk precisely on schedule: he succeeded in raising some £350,000 for research and raised awareness of Parkinson’s disease throughout Britain and beyond. During this year he learned that it was possible to challenge the ceaseless encroachment of Parkinson’s.

Over a thousand people including family, friends and supporters, and his future wife Lyndsey who he describes as “the most incredible girl he had ever met”, joined him for days at a time, including one friend who walked over 800 miles in the most remote part of Scotland. He started and finished at the Millennium Bridge in London, chosen because, like him, it was “wobbly”. Two days later he ran the London Marathon. He told the story of the walk in his book Shake Well Before Use.

On his return he worked with three older men with Parkinson’s, Sir Richard Nichols, former Lord Mayor of London, Air Vice Marshal Michael Dicken and Sir David Jones, Chief Executive of Next plc. With typical Isaacs humour they called themselves the Movers and Shakers. With the assistance of Helen Matthews, a close friend of Isaacs’, they set up The Cure Parkinson’s Trust (CPT), the name alone a challenge to the concept that Parkinson’s was incurable.

All four men had Parkinson’s and the patient-led perspective of the charity was one of its core qualities. The Trust has now been going for more than ten years and is recognised as a key player in the world of research, setting up and funding linked clinical trials on an international basis and taking a leading role in research conferences throughout the world. Isaacs built up his technical knowledge to a level where he could take part in scientific discussions at the highest level. He earned the respect and support of such leading Parkinson’s researchers as Professor Andrew Lees and Professor Steven Gill and enlisted Dr. Richard Wyse as Director of Research and Development for CPT. The incredible support he received from Lyndsey enabled him to continue to the end of his life travelling constantly in Britain and abroad on behalf of the Trust.

His ability to communicate with people from every background was exceptional – speaking recently in Rome about stem cells that led to an audience with the Pope. He worked closely with many international research organisations including the Van Andel Research Institute and the Michael J. Fox Foundation and was adept at recruiting celebrities whose lives or families had been affected by the disease. He was impressive on the radio, walking with Clare Balding, presenting a Radio 4 documentary which was nominated for a Sony Award and being named Charity Personality of the year in 2004. He was an Olympic torchbearer in 2012. A brilliant and inspirational speaker, his self-deprecating humour put his audience at ease despite his flailing arms caused by dyskinesia and loss of balance. “I have been asked to be short but moving,” he would declare. “At 5’7” I am certainly short and I am always moving.” His immense personal charm endeared him to everyone he met, winning new supporters for the CPT. Above all, he inspired people with Parkinson’s, giving them hope that a cure will be found and a belief that their voice was being heard.

Tom Isaacs was born on 2nd April 1968 and died on 31st May 2017 aged 49. He is survived by his wife Lyndsey and his mother, brother and sister.

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