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The PFA is to begin a major consultation exercise designed to provide a clearer understanding of the number of former professional players living with neurogenerative diseases (NDD).

Insight and data from the consultation will be used as part of ongoing discussions with the Premier League, The Football Association (The FA), English Football League (EFL) and League Managers Association (LMA) as work continues towards the establishment of an industry wide care fund to support players living with dementia and other neurodegenerative conditions.

The PFA has been campaigning for a football-wide response on the issue since the publication of the FIELD study in 2019. The landmark study, which was jointly funded by the PFA and the FA, found that the risk of dementia as a cause of death, increased by approximately 3.5 times amongst ex-professional Scottish footballers.

PFA Chief Executive Maheta Molango said: “As the players’ union, we are the voice of professional footballers. When necessary, it’s our responsibility to challenge the industry to ensure the wellbeing and interests of players past and present are being protected.

“Since I joined the PFA just under a year ago, there has been a real commitment from football’s stakeholders to working collectively to address long-term brain health in professional footballers. But former players and their families need help right now. The conversations being had need to result in tangible support and, crucially, significant funding.”

During the consultation period, the PFA is seeking to speak to former players and families who are currently living with a neurodegenerative disease. The union also want to hear from those who have concerns about potential conditions but who have not yet received a formal diagnosis.

Dawn Astle, Project Lead for NDD in Football at the PFA, said: “We currently have hundreds of former players and their families who are suffering as a direct result of their careers in professional football. I hope this process will encourage more former players to come forward and help further demonstrate the sheer scale of the issue.

“My focus has always been on fighting to secure substantial and long-term support for families caring for loved ones with a neurodegenerative disease. I’ve always been clear that the responsibility and duty of care towards players rests, not just with the union, but the entire football industry.

“I also hope that consultation will provide yet more evidence for the Industrial Injuries Advisory Council. After nearly two decades, they now need to recognise CTE as an industrial disease. The evidence is clear and it can’t be ignored any longer.”

The PFA will also be using the insights and experiences shared by participants to further its understanding of the needs of families and develop and improve existing services. The information will also be used to make the game safer at all levels.

PFA Chair John Mousinho said: “This is an area that is a high priority for the PFA Players’ Board, first and foremost in solidarity with former players and in recognition of the need to secure a long-term care provision. We also want to raise awareness among current players and strengthen the case with football’s lawmakers to enhance concussion protocols and improve head injury management.”

To assist with an expected uplift in enquiries resulting from the consultation, the PFA has recruited former goalkeeper and former Head of Manchester United’s Community programme, David Ryan. David is a trained therapist and will work with Rachel Walden to provide support to families. Rachel and David come from football families and backgrounds. Both have lived experience caring for family members who had developed different forms of dementia.

Family Support Coordinator at the PFA, Rachel Walden explained: “Since working with the PFA, the volume of families requiring support has been demanding. We are proud that as a result of the work undertaken over the last 16 months, the PFA is now establishing a dedicated care department focused solely on neurodegenerative disease.

“We have developed a strong network and service that gives families emotional and practical support. But, ultimately, emotional support can only get you so far. Families need substantive and consistent financial assistance to provide care for their loved ones and navigate what can often be complex and challenging circumstances.”

The PFA is also encouraging families of former players who have passed away with a neurodegenerative diagnosis, or who exhibited possible symptoms, to complete the survey, which forms the basis of the consultation process.

Independent consultant Penny Watson explained: “This exercise is an essential step that will influence many aspects of the long-term approach to former player care from the football industry.

“It will demonstrate the extent of the problem and the challenges currently being faced by families up and down the country. We encourage as many former players and their families to complete the survey and share it with friends from football and former teammates, particularly using channels such as squad WhatsApp and Facebook groups.”

PFA FORMER PLAYER CONSULTATION

Consultation link: research.net/r/pfa-ndd-survey