Chai Brady
CEO Tim Collins launches the Irish Heart Foundation’s
childhood obesity manifesto 
Legacy Supplement 2021 – A Future Full of Hope
Legacy donations can help charities like the Irish Heart Foundation and Special Olympics Ireland after a devastating pandemic, and long into the future, writes Chai Brady
The vulnerable in Irish society can be forgotten during times of crisis, which has devastating effects, not least for those who silently suffered a stroke at home for fear of going to the hospital, or a person with an intellectual disability distraught because their routine has been totally upended – the pandemic has a plethora of victims.
There are those who have done their utmost to bridge the gap caused by the need to quell the spread of Covid-19 and the services they provide.
The Irish Heart Foundation’s CEO Tim Collins said that during the pandemic there was a “big issue” with people experiencing symptoms of a stroke but not attending hospital due to the belief they would inconvenience the health service or fears of contracting Covid-19.
“One of the problems we have in the whole area of heart disease and stroke is there is very poor data from hospitals but through our own network of cardiologists and stroke physicians around the country, we certainly were getting very strong evidence that people were not coming in if they had heart symptoms or stroke symptoms,” Mr Collins explains, “and if they were coming in, they were coming in very late.”
When someone comes in late after suffering a heart attack, there will be more complications and recovery will be more complicated. When it comes to a stroke, Mr Collins says: “There’s a critical time period if you have a stroke that you must get into hospital because a good portion of strokes are reversible, particularly if they’re caused by a clot in a large blood vessel.
“The services are there that can help those people but they need to get into hospital early, so we worked with the HSE during that time to encourage people to get in early, we did a couple of campaigns and then we did the FAST (Face, Arm, Speech, Time) campaign which is to encourage people who are getting symptoms of stroke to get into hospital fast but it is also about recognising the symptoms of strokes.”
Mr Collins adds: “I know there is an ongoing reluctance of people to go into hospital or to go to their GP because they’re afraid they are overburdening them or there are concerns about catching Covid but the vast majority of people are now vaccinated, they needn’t worry about that and it’s much more important that they actually present early if they have got symptoms that are worrying them rather than sitting on them and waiting until they do themselves damage, or become ill.”
The Irish Heart Foundation also noticed increased issues with access to healthcare for those suffering from heart conditions, an issue their advocacy team took very seriously. “We found that very early on in the pandemic frontline nurses in heart failure and stroke were being redeployed and so waiting lists grew,” Mr Collins said, “people had difficulty accessing services and we had to do a lot of work in that area to try and promote the interests of the people that we represent.”
Childhood obesity
The same team are also behind efforts to tackle childhood obesity through legislation such as the sugar tax, which came into effect in 2018.
Like many others, the IHF had to move online to continue services. They developed a number of programmes for teachers who were teaching children from home and subsequently in school, one of which was ‘Bizzy Breaks’. It aimed to give teachers the resources needed to break up class time and get children more active during class and between classes.
Many of their community projects had to stop during the pandemic, one of which is their mobile health unit which reached out to disadvantaged communities and conducted health checks – working with partners such as Pavee Point and Men’s Sheds. Mr Collins says they are now beginning to increase their activities but it has been a slow process due to social distancing and ensuring vaccination uptake rates were at a high level.
“The area that has probably changed the most for us in the course of the pandemic has been supporting patients in the community who are living with heart disease or stroke,” Mr Collins explains.
“So prior to the pandemic we had about 25 in person support groups around the country that people went to every week and we would give them social support, physiotherapy, help and advice and so on, and these were very important for people who are trying to live with or recover from stroke or living with heart failure,” he says.
Shut down
When the pandemic struck those services were shut down meaning the IHF had to pivot into delivering online services. In relation to stroke, they were asked by the HSE to provide a check-in service for people who had just been diagnosed and were about to be discharged from hospital because “the hospitals were overwhelmed”, Mr Collins says.
“We took on their care on the day they were discharged so we set up the service literally overnight, so when patients were discharged, they got a call from our check-in team which is nurse-led. We then go through a care plan for them over a six to eight-week period and check in on them regularly so if their situation gets worse we can then refer them back to the hospital or we can give them any other help and advice.
“That has been hugely successful and we’re working with most of the stroke units around the country on that programme and we’ve backed that up then with our ongoing support for people who are living with stroke through Facebook.”
Regarding people living with heart failure – a chronic condition experienced by thousands of people across Ireland – the IHF are also running support programmes using Facebook.
One effect of the pandemic on the foundation is that it has scaled up its operations. Mr Collins says they have drastically increased the number of people they are supporting and will continue to endeavour to expand but also try and find a way of giving face to face support to people who really need it “because that is a key element as well”.
“It’s been a very challenging time but it’s certainly changed us as an organisation and changed our outlook and the channels and way we interact with people,” he adds.
In addition to these challenges, the foundation, being the national CPR training organisation, were “busier then ever” due to the vaccination programme which required health care workers to receive CPR training. Mr Collins said they have trained “hundreds of thousands of people in the last couple of years”.
Legacy
Legacy donations are an “absolutely vital source of income” for the foundation, Mr Collins says. About 90% of the IHF’s income comes from donations from the public, with legacy donations making up more than 20%. About 10% of their funding comes from the State.
“We’ve been fortunate as an organisation because we’ve been part of life in Ireland for more than 50 years, and people know us well, there’s a high level of trust in the foundation, and they have a good insight into what we do and the impact that we make,” he says, “People are comfortable mentioning us in their will because they know that the funding is going to an organisation that is having an ongoing positive impact but also that their money will be spent on services which are vital and important.”
The IHF are currently working on a nationwide survey on how children understand health, their own and the wider issues on health and how to manage their health. They are also working with six DEIS schools to develop a wellbeing curriculum, a project which is at an advanced stage, in conjunction with the World Health Organisation which has designated it as a major international demonstration project on health literacy in schools. This work began off the back of a large legacy donation.
Mr Collins says: “We decided that this project was so important – and it’s an expensive project – that legacy enabled us to actually move that project forward.
“A large legacy gives you the opportunities as an organisation to do things that you wouldn’t normally be able to do but you know will make a difference.”
Profound impact
The pandemic has caused huge distress and has impacted everyone in various ways. For people with an intellectual disability, it was something many struggled to comprehend – the abrupt halt of physical contact and seeing friends, and the breaking of important routines.
Matt English, CEO of Special Olympics Ireland, says “the impact was profound” and that they quickly moved online to try and keep contact and engage their athletes in a myriad of ways.
To name a few, they ran ‘Together at Home’, an online initiative which focused on running sports classes online. There were virtual competitions in which about 1,000 people competed – medals were posted out to all participants and an online ceremony was held. There was also online health promotion with their ‘Strong Minds’ programme which is an interactive learning activity focused on developing adaptive coping skills. For Mr English, the bottom line is that Special Olympics Ireland supports people with intellectual disabilities “to do the best they can and be the best they can” in a supportive environment.
Speaking about the range of athlete’s abilities, he says: “We have participants who are wheelchair bound and need care almost 24 hours, we give them an opportunity – it could be pushing a bowling ball off a rail and knocking skittles down the other end, to where we have footballers that are extremely good and could be married with kids but they still have an intellectual disability.
“What we may find at the higher functioning end, people might join Special Olympics, get confidence and join a mainstream club and that to me is success for us – it’s not what we’re about – but we welcome that,” he says.
“We want to have integration and we’re working with a lot of national Government bodies of sport, like Basketball Ireland, the Football Association of Ireland etc., where we have clubs within their clubs and if people have the ability to mix, they will do that.”
Ultimately though, Mr English says there are a lot of people with an intellectual disability who are more comfortable meeting people of their own ability. “They form friends, it’s a safe environment, they can just train if they want but they also have the opportunity to compete and, potentially at Special Olympics world games, represent Ireland on a world stage. Just like the mainstream population, some people love competition, more people like the social aspect of sport, more people just want to lose a few pounds or want to just feel better about themselves.
“If you’re 80 years of age you can join Special Olympics and you can try do a 50 metre walk and if it takes you 30, 40 or 50 seconds so be it. We will find competition, or people of a similar ability for you to train with. It really is open to all people with an intellectual disability.”
There are approximately 45,000 people on the island of Ireland with an intellectual disability. Close to 8,000 are registered with Special Olympics Ireland as athletes. It is not an elite sports organisation, with Mr English saying “We divide on ability not disability”, which is reflected in their motto: “Let me win, but if I cannot win let me be brave in the attempt.”
The focus of the organisation is for everyone irrespective of age, gender, size, creed, ability level, ethnicity or level of intellectual disability to be able to train and compete if they wish with similar ability athletes. As well as their athletes, there are “tremendous benefits” for family members and volunteers who become a part of a much bigger global family says Mr English.
For participants, Mr English says: “It’s life changing, the independence that they get, the confidence they make, the friends they make and if you’re on a world stage you form friends from different countries. They get healthier habits. Now some of them need a lot of help but they’re trying to get them to take more responsibility. It’s a huge thing for the parents to see how much going away to the games can increase their potential and their outlook and things like that. Much the same results can be achieved at a club as well.”
So far 97 out of their 274 clubs have reopened, with Special Olympics Ireland working hard to make sure they can continue reopening safely. The pandemic caused their Olympic games to be deferred until 2023, with their winter games due to be held in Russia and summer games in Berlin, but the calendar will certainly be filled as things get back to full swing.
For Mr English, his main hopes for the future are:
“That all our clubs will open up again soon.
“That our athletes and volunteers can meet again face-to-face very soon.
“That we can improve our health, well-being and re-ignite friendships very soon.
“That we can host competitions again for those athletes who love to compete.
“Team Ireland can demonstrate their outstanding abilities on a world stage.
“That all our athletes can feel fully included and accepted in society
“That we can offer participation opportunities to more ‘Young Athletes’.
“That we can offer more athletes inclusive options in their communities.
“That we can remove barriers that may slow down our ambitions, one of which is sustainable income streams.”
Legacy donations have been key when it comes to accelerating the programmes they have in place as well as new initiatives, such as ‘Young Athletes’, which engages young people aged 4-12 who have an intellectual disability. Another initiative, ‘Athlete Leadership’, encourages athletes to develop skills that will empower them to be advocates for all athletes and act as a leader for Special Olympics Ireland.
There are currently about 600 athlete leaders who can partake in various programmes to develop their skills, one of which is interview skills.
“Certainly, what we’ve done over the last number of years is let the athletes speak for themselves, they were on the Late Late Show, lots of TV programmes, they do lots of radio interviews, the last world games we came back from Abu Dhabi, there were about 15 athletes doing radio interviews,” Mr English explains.
“Rather than the parents or people like myself, more and more of our athletes are speaking for themselves and they can tell their story much better.”
Funding
Mr English says: “Some traditional funding sources are no longer yielding the same results. The move towards a cashless society has impacted Special Olympics who traditionally received generous donations across all local communities during our annual collection day.
“It was not possible to recruit 3,000 volunteers and collect in public places during the pandemic. People don’t carry cash as much and people are still nervous about donating online. Legacy [donations] are a very cost-effective way for donors to ensure they leave a legacy by supporting the causes that are truly important to them.”
Hurtful
There’s always a small percentage of people that can be “very hurtful” towards people with an intellectual disability, says Mr English “and that can dent people’s confidence”.
“A lot of people with an intellectual disability have experienced that throughout their lives whether they’re in pre-school, primary school, secondary school and of course there’s a lot of ills with society. Certainly, the clubs would tend to be a very safe environment for them because the volunteers can often be relatives or they can be people who want to give back to society.
“If it’s a Special Olympics community club where only people with an intellectual disability are then it tends to be a very safe environment for them… we would have a lot of safeguarding practices in place and have given a lot of training to the volunteers.”
Mr English says Ireland isn’t a “perfect society” when it comes to prejudice towards people with an intellectual disability, and while they do want athletes to have more inclusive opportunities in mainstream clubs, there is a risk, “because you can’t say in a mainstream club how people will treat people with ID [intellectual disability]”.
“But again, we will only do that where the mainstream clubs have gone through various training on how to deal with people with ID,” he says, including safeguarding of vulnerable adults and children, “so all that needs to be in place; and most clubs have come such a long way compared to 20 years ago.”
Overall, for Mr English and Special Olympics Ireland, the aspirational goal is that “all our athletes can feel fully included and accepted in society. It’s always going to be a challenge. It’s like trying to say there shouldn’t be racial discrimination, or we don’t want hunger, or we don’t want homelessness, but really that is our hope”.
