Julie Benson is the Family Support Manager at Rett UK, a national charity that supports families affected with Rett syndrome.
“I cover the whole of the UK, including Northern Ireland, Scotland, and Wales, which means I have to understand a little bit about all the legislation which is quite complex and quite different. We do have quite an army of parents and family carers.”
As a charity, it would help to have additional resources made available to them to help support families more. “When I joined the organisation, there were two of us, then we went up to three, and sadly with pressures and things we’re back down to one at the moment. It's been one of my dreams ever since I came here to have ‘a me’ in England, Ireland, Scotland and Wales. I'm working from home in England, I can talk on the phone to somebody in Northern Ireland, but physical presence would be better. We're dependent totally on funders and you've got to prove the need to get the money, but I'm not there physically to do it. Dealing with the devolved nations is difficult at times, you've got to understand the different terminologies and local legislation etc. Every health board and local authority is different on top of the national differences, so having staff in each nation would be helpful but financially at the moment this is not achievable. The main focus is on helping the families.”
“Rett syndrome is a genetic condition. It's classed as a rare disease. It affects 1 in 10,000 girls and 1 in 40,000 boys. So, although it's a girl predominant syndrome, it does affect both sexes. Boys are rarer. It impacts them differently from girls and can be quite catastrophic, it is a life-limiting condition. Rett syndrome is present at birth, but it's not obvious. It's a dominant gene, so children pass their birth checks, quite often passing the little infant tick checks. Between 6 and 18 months, parents report that their child is getting a bit clumsy, and they're losing some of their motor skills, we call that the point of regression. That's where the gene decides to switch itself back on again. We've had that described as putting a child to bed and waking up a different child. It's quite catastrophic almost overnight. It is not Rett Syndrome that is life-limiting but the whole host of issues the syndrome causes like respiratory failure.”
The organisation has seen more families reaching out or struggling due to the cost-of-living crisis, which is on top of the shortage of care available for families post-COVID.
“I think the effect of the cost of living is also huge for our families.”
“All those things that impact on them and we're not even then talking about how much more the food is gone up. A lot of them are on gluten-free diets, and everything's more expensive.” The bills and incomes are not always compatible especially with rare diseases and disabilities, there is a lack of opportunity that could change the incomes for many of the parent carers.
“We have girls that are ventilators, PEG [percutaneous endoscopic gastrostomy] fed, and/or on oxygen. Overnight epilepsy monitoring is needed. All of this cranks up your electric bill so high. These are families that were struggling before. Some people are saying, ‘I'm living on cuppa soup because if I don't, I can't feed my children.’ We're part of the Genetics Alliance, and we meet up quite regularly with other sorts of rare disease charities, and we all know, we are reaching middle England and above, but it's the people that really, really need us that just don't think and have the time. You know, they might see an email and think, ‘Oh, I'll get hold of them, I'll do that.’ Then life just takes over and months pass. They just don’t have the time.”
Unfortunately, the organisation doesn’t have an infinite pot of money to financially help families. They will however help with signposting to other sources of help like Citizens Advice or Turn to Us to help make sure families are getting everything they are entitled to. They will also help with advocacy and statements to back up requests for help and support. “You know, it's a little bit of clout, but not a lot. It does seem to be making a little bit of a difference.”
Rett UK was given access to a small pot of money that they could use to help families. “We were able to give 25 people access to that grant. So that was really good. One family that we helped with a grant called to thank us and you could hear mum or grandma weeping in the background because this £500 was such a help to them, it had made such an impact on that whole family. We have found that some of the families just don't have time to reach out more. That's the families that are on the poverty line. They're worrying about how they are going to pay their gas bill, how they're going to cope with their daughter, they don't realise that if they contacted us, we could make life easier, but because they don't have the time we're right at the bottom of the pile.”
“We're seeing a lot more families at the crisis point. The whole mental health and the people that are living in this day to day today, it's a grind.”
Due to the devastating regression of the children, many adaptions need to be made to homes to provide a standard of life, such as wheelchair access, hoists and wet rooms etc., All of this can also put a strain on families, and some have to move to a new property. “We've got people waiting up to three years to have adaptions to their properties. They've already been told it's no longer appropriate to lift their child because they are too heavy and yet three years down the line they're still in inappropriate housing and still have no resources. They're still lifting this child who is now three years heavier and taller. It was bad enough before the lockdown, and now it's escalation of costs. Initially, 10 years ago my role was picking up a phone and giving someone a bit of advice, and they'd be able to go off and do it. Now I'm writing advocacy statements supporting that need and fighting that cause and the importance of this family getting whatever help is needed.”
Our cost of living project is supported by:
Return to the cost of living page
Read about Pete from The Fragile X Society
Find out more
Rett UK
Rett UK is the only UK charity that provides professional support to people living with Rett syndrome across the UK. Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome. Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.
To learn more about Rett UK, click here.
Source: https://rettuk.org
Rett Syndrome
Rett syndrome is a rare neurological disorder affecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills and become withdrawn. Genetic but largely not inMeredith-Springherited, Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.
To learn more about Rett syndrome, click here.
Source: https://rettuk.org