Written evidence submitted by the Professional Footballers’ Association

Call for evidence // Concussion in sport written evidence

Introduction

The Professional Footballers' Association is the union for all current and former football players and scholars across the four male professional English leagues and the Women's Super League.

The aims of the PFA are to protect, improve and negotiate the conditions, rights and status of all professional players, both men and women, by collective bargaining agreements.

The PFA is a key figure in all aspects of the professional game. The players' union believes in using the power of football to effect positive societal change and operates by the principle of caring for the interests of the game as a whole.

The PFA and The PFA Charity have always been committed to a duty of care for all past, current and future members. The union has lobbied the football authorities to join with us on all aspects of health and safety in the game.

Industrial Injuries Advisory Council

In 2002, , the former Albion striker, died at the early age of 59 after being diagnosed with dementia five years earlier.

The consultant neuropathologist who examined his brain after his death stated, "I found that there was considerable evidence of trauma to the brain similar to that of a boxer. The main candidate for the trauma was heading a ball. It is the repeated trauma that appears to be the problem."

The coroner also said, "His type of dementia was entirely consistent with heading a ball. The occupational exposure has made at least a significant contribution to the disease which caused death".

Jeff Astle's brain was found to have Chronic Traumatic Encephalopathy (CTE), which is the term used to describe brain degeneration likely caused by repeated head traumas.

This was the first time that it had been diagnosed in a former professional footballer and confirmed to have been linked to CTE. Since then, as far as we are aware, there have only been three other former footballers (Rod Taylor, Alan Jarvis and ) who have died with dementia and then subsequently had their brain examined and found to have CTE.

In 2003, following the coroner's verdict, the PFA made an initial application to the Industrial Injuries Advisory Council (IIAC) to request that dementia in former professional footballers be recognised as an industrial disease.

In 2005, the application was rejected, with the IIAC publishing a report which concluded that there was "currently insufficient evidence to recommend prescription of dementia in boxers or footballers".

In 2020, following the FIELD Study findings, the PFA has since supported a further application made by Nick Gates (son of professional footballer Bill Gates). We are still awaiting a decision from the IIAC regarding this. Research

The PFA is now part of The Football Association's (The FA) Research Taskforce alongside other stakeholders in the game. Established in December 2019, the taskforce works to ensure a coordinated approach towards research into neurodegenerative disorders in former professional footballers.

The panel includes medical experts in this field: Dr Charlotte Cowie, Professor Carol Brayne, Erica Pufall, Dr John MacLean, Dr Jonathan Schott, Margot Putukian, M.D., FACSM, FAMSSM, Peter Hamlyn, Richard Higgins, Dr Richard Sylvester, Professor Simon Kemp, Dr Carol Routledge and Dr Willie Stewart.

Research: Neurological neuro-imaging and neuro-psychological effects of playing professional football In 2001, The FA and the PFA had jointly funded a 10-year study into the 'neurological neuro-imaging and neuro-psychological effects of playing professional football'.

The study was conducted by academics Steven Kemp, Alistair Duff and Natalie Hampson.

To our knowledge, this was the first longitudinal prospective study to follow-up a group of footballers and controls over time. Thirty-two young professional footballers were recruited, and 24 were identified at follow-up. Thirty-three controls were recruited, and 17 identified at follow-up.

Medical examination, MRI (brain) imaging and detailed neuropsychological data were collected on the footballers at baseline and 5-year follow-up. Medical examination and detailed neuropsychological data were collected on the controls at baseline and 5-year follow-up.

Unfortunately, due to several reasons outside of the PFA's control, this research programme was truncated and eventually reduced to a five-year project. The players participating in the study did not progress within the game as hoped, and in addition, over time, the researchers were unable to engage the original participants for follow-up examinations. The study was published in the Brain Injury Journal in 2016 - https://pubmed.ncbi.nlm.nih.gov/27184946. The results of the study were inconclusive and left many unanswered questions.

FIELD Study In 2017, the PFA Charity – together with The FA - commissioned Dr Willie Stewart and the Glasgow Brain Injury Research Group to conduct research into 'Football’s InfluencE on Lifelong outcomes and Dementia risk’ (FIELD) at the University of Glasgow.

The study took place in Scotland, after recent changes to their storage of digital health records made accurate data comparisons possible.

The FIELD study is the first peer-reviewed research to determine that having played professional football correlated with an increased rate of dementia within its sample group.

The results showed that the ex-footballers participating in the study had three and a half times the death rate due to neurodegenerative conditions than the control group.

7,676 former footballers were studied, each one grouped with three non-sporting members of the general public for comparison. The participants were matched by age, socioeconomic status and lifestyle to compare their risk factors and dementia status.

Over 18 years - 1,180 of the 7,676 footballers included in the study died. Of which, 222 died from a neurodegenerative disease. Risk rates for the former footballers in the study varied across the subtypes of neurodegenerative conditions, with:

 A 5-fold increase in Alzheimer’s disease.  Approximately a 4-fold increase in motor neurone disease.  A 2-fold increase in Parkinson’s disease.

FIELD Study Extension The PFA Charity, alongside The FA has committed funding for a further year (2021-2022) to Glasgow University to continue their research and to build on the initial results of ‘The FIELD Study’.

The FOCUS Study The PFA, together with The FA, has co-funded ‘The FOCUS Study’ at Nottingham University to research brain function and joint health in former professional footballers.

International Concussion and Head Injury Research Foundation The PFA has funded research by the International Concussion and Head Injury Research Foundation (ICHIRF) to examine ‘Head Injuries in Sport’ with jockeys and footballers.

The Heading Study The PFA is currently working alongside The Drake Foundation who are funding ‘The Heading Study’ research programme by The London School of Hygiene and Tropical Medicine and Queen Mary University of London. The PFA has helped recruit 300 former players to help examine the link between heading the ball and/or concussions, and long-term cognitive function.

New Call for Research into Neurodegenerative Disorders This year, the PFA and The FA have invited applications for further independent research into neurodegenerative disorders in former professional footballers.

Following the insight provided by the FIELD study, the PFA and The FA will now jointly fund new independent, evidence-based research into the increased risk of death from neurodegenerative disorders in former professional footballers, focusing primarily on what causes the increased risk.

It is The FA’s independently-chaired Research Taskforce, that plays the crucial role in this process, and this group of industry and scientific experts shape the policy, direction and decision-making when identifying specific areas for research.

The expert panel have set the question on the new call for research: “What is the cause of the observed increased risk of death from neurodegenerative disorders in former professional footballers found in the FIELD study?”

Research applications are encouraged to address secondary questions such as the risk to current players, risks at different levels of the game, the nature of any risk in childhood, the risk in other sports and the risk in women’s as well as men’s football.

The FA’s Research Taskforce will establish the potential viability and validity of any application. Once selected, The FA and PFA will jointly fund the new research. Protections for Current Players

Regulatory changes In 2006, following the injury sustained by Petr Cech in the Chelsea v Reading game, the PFA lobbied the Premier League (PL), English Football League (EFL) and The FA with regard to reviewing the treatment of head injuries and other significant injuries in competition and in training. As a consequence of this, a change was made to the regulations in both leagues, which required clubs to share medical information on the facilities available at grounds and also to ensure that all medical staff had the necessary sports medical qualifications. A football-specific course was developed - Advanced Trauma Medical Management in Football (ATMMIF) which ensures quality assessment in the areas of resuscitation and emergency aid. All medical staff at clubs who are treating players must have completed the course to practice in professional football.

In 2013, following an injury to Hugo Lloris in the Everton v Tottenham game, the PFA assisted with the development of an educational campaign aimed at all participants within the game and a review of the assessment and treatment of head injuries and concussions.

This resulted in the introduction of new guidelines and rules for the 2014/15 season for the management of concussion and head injuries in football. The guidelines set out the important procedures and processes that follow any suspected head injury and how players should be re- introduced to competitive football over time through the new ‘return to play’ rules.

FA Expert Panel on Concussion and Head Injuries In 2015, the FA Expert Panel on Concussion and Head Injuries was formed. The expert panel has been instrumental in developing new guidelines that have been adopted as regulations regarding the assessment, treatment, and enhanced return to play protocol.

These guidelines and regulations now ensure that the medical staff have full responsibility in the assessment of a player who sustains a head injury and if he/she can continue.

Concussion Substitutions Following the FIELD Study results, the PFA wanted the introduction of concussion substitutes in the PL, EFL and Women’s Super League (WSL).

The PFA lobbied the International Football Association Board (IFAB), which governs the laws of the game, through our membership with FIFPRO, the world players’ association. A PFA staff member represents FIFPRO on IFAB’s Football Advisory Panel.

In December, IFAB announced a trial to introduce permanent concussion substitutes and invited competitions to apply to be part of the process. Despite a relatively low take-up of the trial globally, the PL, The FA and WSL are all participating.

The PFA has welcomed the fact that English football is taking the lead on the trial. However, we maintain that temporary concussion substitutions is preferable to the permanent substitutions proposed by IFAB, or at least trialled in parallel.

We believe that temporary replacements would help medical teams with additional assessment time and give them the opportunity to conduct the assessment in an appropriate environment.

The introduction of a temporary substitute could allow a match to restart with neither side numerically disadvantaged, potentially reducing pressure on players and medical teams to make quick decisions on whether the injured player can continue.

Finally, the PFA is in complete agreement with the principle of ‘if in doubt, sit them out’. However, we want to highlight that this threshold does not apply exclusively to the use of permanent substitutions. Reduction of Heading in Training With the information now available, as a measure to reduce potential long-term health risks associated with heading a ball, the PFA wants to see reduced heading frequency in training and rest periods in between heading sessions.

In November 2020, we called on the support of clubs, leagues and The FA to create a coordinated strategy to measure, monitor and adapt training, identifying protections that can make a difference to the long-term health of players.

Since the beginning of this year, the PFA has been working with a sub-group of the PFNCC, including the PL, The FA, EFL, WSL and League Managers Association (LMA) in collating data on heading the ball in matches and training.

In March 2021, on behalf of the sub-group, the PL announced that it was undertaking two research projects in this area.

An initial cohort of players from Liverpool FC’s U23, U18 and women’s teams and City’s U18s and women’s teams will participate in one study, which is being conducted with sports welfare technology company Sports & Wellbeing Analytics (SWA).

Players will be provided with PROTECHT mouthguards, which will collect data to show how the force and frequency of impacts affect the brain and body. The equipment will be fitted with sensors to provide precise measurements and the data will be independently verified.

A second study is being conducted in partnership with Second Spectrum. This study will compare match-tracking data from the 2019/20 season with results from the mouthguard study.

The results of this project will contribute to the development of practical guidelines for the English professional game. The PFA will be calling for new guidelines to be introduced for the beginning of next season (2021/2022). Former Members

Data We have provided figures for the number of members we have recorded as having a neurodegenerative condition.

It is important to note that we expect the figure to be higher than the numbers provided. We are currently building on this existing dataset (detailed below).

The PFA is currently aware of 275 members who have received a neurodegenerative diagnosis – this includes various types of dementia, Parkinson’s disease, motor neurone disease and locked-in syndrome.

Of those 275 members, we are aware that 144 former players have passed away. There are 132 players that we are aware of currently living with a neurodegenerative diagnosis.

Below we have shown a timeline for the number of members who have passed away with neurodegenerative diseases between 2000-2020.

Members who have died with a neurodegenerative diagnosis

35

30

25 of

20

15 members Number 10

5

0

0 500 1000 1500 2000 2500

Year

Our records show that we are aware of six players with a neurodegenerative diagnosis who died before this period. In 2021, we are aware of 12 former members who have passed away with a neurodegenerative condition (as of 29th March 2021).

Support The PFA and The PFA Charity are committed to supporting former members living with dementia and their families and have been jointly providing financial support in this area for the past 20 years.

This support includes financial assistance towards provisions such as home improvements, respite care, independent benefits advice, counselling provisions for family members and help with care-at- home costs.

The PFA has always endeavoured to give the families the best support possible, but we are not immune to criticism and are working hard to improve our service in this area. We had received public criticism from families who had accessed PFA support, where it was clear that the overall experience and the type of help they received had fallen short of expectations.

In November 2020, we took steps to address this and improve our members' existing care provision. We started a consultation process, listening to family members of former players with dementia and other interested parties to inform the PFA's work in this area. The feedback received centred around the need for specialist advice and guidance, proactive and regular contact, and an empathetic and understanding approach - this personal approach, underpinned by financial support based on individual needs.

This period included several constructive meetings with Dawn Astle (daughter of Jeff Astle) and Rachel Walden (daughter of Rod Taylor). With the input of their personal experiences, we collated feedback on how the union can better support families in similar positions moving forward.

In January 2021, the PFA asked Dawn Astle and Rachel Walden to advise the players’ union in a formal capacity on an initial six-month basis. The advisory roles include helping the PFA provide immediate support, guidance and advice to families who have received a dementia diagnosis. There is also a remit to help the union scope a permanent neurodegenerative in-house team, provide input into research and look at new measures to strengthen protection for current players.

Dementia Information and Support Courses During the initial period of the new advisory roles, it was identified that the PFA would benefit from specialist support and advice to deal with some of the more complex cases presented.

As a result, the PFA has partnered with Dementia Information and Support Courses (DISC), an organisation introduced by Dawn Astle. DISC is a Community Interest Company that provides support service for carers of people living with dementia. They advise families in complex cases and coordinate with social workers, adult social care and care homes on behalf of our families.

DISC also provides training courses for family members to support loved ones with dementia while offering ongoing mentoring, advice, and training to the Dementia Support Team. This service is a future provision that PFA believes could be valuable for families of members who receive a dementia diagnosis.

Sporting Memories The PFA has a long-standing relationship with the charity, Sporting Memories. We have recently partnered on a pilot initiative, holding events for former professional footballers with dementia to meet and reminisce with other former players.

If these initial meetings are successful, we hope this scheme can be replicated and upscaled at all football clubs across the country.

Global Responsibility

The PFA has called for a global game-wide strategy for dealing with dementia and neurodegenerative diseases in football. Brain injury in sport is an international issue, and we firmly believe that FIFA and UEFA should be leading on this issue from the top, across the whole game to ensure a parity of protection and support for all players.

Future Actions

Education The PFA is in discussions with the football stakeholders and other brain injury organisations and charities in developing an education programme around brain injury. We envisage that these programmes need to target players, coaches, managers, supporters and the media.

We believe that education, knowledge and information and brain injury is critical. Players need to be able to make an informed choice on the potential dangers and protections in place when playing professional football. Brain Donation Hub The PFA is looking to initiate a ‘Brain Donation Hub’ to help build a body of evidence around neurodegenerative conditions in former professional footballers.

The PFA has met The Concussion Legacy Foundation, an organisation founded by Chris Nowinski, Ph.D. and Robert Cantu, M.D. We want to initiate a system that would allow multiple research institutes, to access brain donations from former professional footballers. We believe that this data will be essential to help further our overall understanding of brain injuries and sport, help support the application to the IIAC and reinforce the need for an industry-wide player care fund.

Industry-Wide Care The PFA wants to see an industry-wide fund set up to pay for care home fees and other associated costs for former players who receive a neurodegenerative diagnosis. Due to the overall cost of care, it is simply not financially viable for the PFA to solely fund this support provision. Other football stakeholders such as FIFA, UEFA, PL, The FA and EFL should contribute to a joint fund.

Another potential consideration is a Football Care Home that could help support former players who have dementia. For instance, this could be at the FA’s Training Centre at St. George’s Park or another suitable place. A feasibility study would need to look into the need, cost and management issues of such a project.

Data Expansion The PFA will soon be exploring the complete digitisation of information. The existing database currently holds around 40,000 members. As part of the process, a particular focus will be on players’ post-war era, tracking comprehensive information of DOBs, position and complete club history. We will also look to expand medical information collected around neurodegenerative diagnoses.

Mindful of GDPR responsibilities, we are currently embarking on amalgamating the PFA’s existing data on former members with data collected by The Jeff Astle Foundation.

We are also looking to initiate a formal communication network with clubs’ Former Player Associations to help identify former players who may have a neurodegenerative condition. This improved network will help engage participants with future research programmes and signpost the PFA’s support.

Female-specific research The impact of professional sport on women’s long-term brain health is an issue that needs specific attention due to the different physiology in female athletes.