Pete Richardson is the Managing Director of The Fragile X Society. The charity was established in 1990 by families whose children had just been diagnosed with Fragile X Syndrome
The central aims is to provide much-needed support, information and guidance to individuals and families living with Fragile X Syndrome. Over the years the charity has grown, and today consists of a team of dedicated employees and volunteers, who support numerous of individuals and families across the UK.
The team at Fragile X operate a telephone support service, Pete explains that whilst they have not experienced a significant increase in queries directly related to the cost of living crisis this does not mean it is not an issue for the Fragile X community. “It's indicative of two things. One is that there is a lag factor, people have managed to scrape through the last winter. We anticipate this winter there will be significantly more issues because people can be very resourceful and rally around for a short period of time, when it becomes the norm it will be different. We know too that people might have lived off savings or had support from relatives last year that they simply won't be able to access this year. So we see that the second thing is, and this is a bigger worry, is that many of our families and clients just won't be accessing resources and going out this year.”
Fragile X Syndrome (FXS) is a genetic condition, with a wide spectrum in terms of impact. The syndrome can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, and behavioural problems. It varies from individual to individual just how affected they are by the condition. Many of the individuals they support are easily isolated.
As well as their helpline the Fragile X Society has traditionally run conferences, which presented an important opportunity for the Fragile X community to meet in person. The team has seen the engagement with these events from their members decrease, and whilst it might not be the only factor the team feel that the cost of living crisis is most certainly a hugely important causational factor, the outcome of which will be to exacerbate the isolation already experienced by some of their members. Especially following on so closely from the repeated lockdowns that were in place during the COVID pandemic, which they had already identified as having a huge impact on their members is because of their anxiety and their reluctance to go out. “The pandemic may have suited some of our members well, as they will have been happier in the short term being at home. But now it means that if they haven’t started going back to day centres, or to the dentists and things like that then there will be a sort of storing up of problems later down the line.”
One of the questions that so many of the small, support-based charities must ask themselves in these difficult times is how they can best help. Would it be by trying to secure funds that families could access “to get essential equipment, things like fridges or cookers, or something that helps with the cost of living, particularly the cost of heating and lighting etc?” Or, should the focus perhaps be on “mental health, which is actually very much overlooked and seen as an add-on rather than an essential thing.”
In which case a fund, for example, that families and individuals could access to help support the expenses that they might incur to attend in-person conferences and events, might be an important way to help meet some of the more hidden costs (both financial and emotional) of the cost of living crisis.
For the organisation, the increased isolation of their community is one of their biggest concerns. “We worry that there are people out there who are simply so busy, just trying to make ends meet and to get through from one day to the next that they don't contact us. They are isolated and at that quiet desperation stage. You know, particularly if you're a single mother for example; you work, you get the kids to bed, you have your child with special needs who needs extra support, so the last thing you want to do in the evening is engage in a webinar. Sometimes you just sit on the couch, collapse and fall asleep. In the short term, that might work for them, but in the longer term they're just not accessing the services, the help and support that they would need.”
Meeting this challenge is hard, because as Pete explains it is not as simple as changing how they offer their support and outreach services because the issue is not in how the services are offered but in how much any one individual can do. “It is about how much is on one person's plate and often it's too much. What we see amongst our membership is there's a real goodwill towards us, but even with that goodwill it can be hard to engage with us. To give you an example, if we have a meeting coming up on a Saturday morning we know there will be a high drop-off rate because even though it's online, families will reach Friday and they will be ready to collapse. When they wake up on Saturday morning, and the kids are running around even with the best will in the world they're not going to engage with us, because they have literally got to get through the day.”
The organisation has recently employed a counsellor whose background and experience are with genetic conditions. Families (and individuals) can have between six and eight sessions, each lasting an hour. This new service, seeks to build on the support already offered by the helpline service.
“To be able to talk to someone, to be able to have a longer conversation and to be able to talk through their issues and to get some support, because we recognise the psychological challenges and the damage that the cost of living crisis post COVID is having on our members.”
In addition, he adds, it is important to recognise the very practical and immediate impact that the cost of living crisis will have on families whose children have Fragile X Syndrome. “The cost of living also means that certain things that there would have been accessible, for example, indoor play areas or other activities that would have previously been part of a child with Fragile X’s life are just not affordable anymore.” He worries that it is for these families in particular that there is a very real possibility that if we experience a particularly wet or cold winter this year the cost of living impact will hit especially hard; “when it's nice outside you can take the right safety measures and go out for a run around and a play in the park. But if it's not, that's a real problem and people become isolated.”
Finally, he explains, there is also the very real and worrying prospect of the impact that the cost of living crisis will have on the charity itself. “It is affecting us as a charity too, in terms of our income and funding. Because grants are drying up, foundations are giving less money which in turn means that we will have less. But, as mentioned before there's a lag factor, but if it continues like this over the next few years we'll be less able to give support, and the impact then is felt by the members.”
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The Fragile X Society
The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of fragile X, and so the Society came into existence. Discovering that your child has fragile X can be a devastating experience. They want families to have the opportunity of support from others who know the problems, and to have access to full information about the syndrome, including the latest medical, psychological and educational research findings. With a fuller understanding of the condition, parents can be far more constructive and effective in helping their children to reach their full potential.
To learn more about The Fragile X Society, click here.
Source: https://fragilex.org.uk
Fragile X Syndrome
Fragile X Syndrome (FXS) is a genetic condition, affecting around 1 in 4000 males and 1 in 6000 females. It can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, and behavioural problems. Some may experience connective tissue issues such as difficulty breast-feeding, hypotonia, hyperflexibility, flat feet, recurrent ear infections and mitral valve prolapse. FXS is the most common inherited cause of learning disability.
To learn more about Fragile X Syndrome, click here.
Source: https://fragilex.org.uk