News & events Navigating the challenges of Prader-Willi syndrome to bring festive joy!
As we approach the most wonderful time of the year, many of us enjoy more of our favourite foods. But for people with Prader-Willi syndrome, the seasonal focus on food can become overwhelming and have a negative impact on both their mental and physical wellbeing. Commonly a source of anxiety, dietary management can trigger mental health struggles for many people with the condition.
Prader-Willi syndrome is a rare genetic condition affecting around 2,000 people in the UK. The condition is caused by a defect of Chromosome 15, which affects the part of the brain managing hormones, including those that control appetite and emotions. When it comes to food, people with Prader-Willi syndrome struggle to feel full after eating. Without correct support and management, this can lead to dangerous levels of overeating.
So, with the indulgences that Christmas brings, how do our specialist Prader-Willi syndrome services manage this? We caught up with Samuel Day, Senior Support Worker, at Esmer House, and Wayne Burton, Service Manager at Mason House, to find out…
How do you support people with Prader-Willi syndrome to manage their diet over the festive period?
S: Christmas is a time of year when many people put healthy diets and exercise regimes on hold until January. For people with Prader-Willi syndrome, it’s not that simple and health issues quickly arise if their diets aren’t managed correctly.
Every person we support at Esmer House is on a calorie-controlled diet, ensuring they get all the healthy nutrients their body needs without eating in excess of their energy requirements. We cook fresh foods, weigh out ingredients, and tailor menus to each individual.
Christmas can be a tricky time as a lot of activities centre around food. Throughout the year, our approach is to apply balance to each person’s diet. They still get to enjoy their favourite foods, but in moderation.
We take the same approach for those with Prader-Willi syndrome at Christmas as we would if a person we support was going on a holiday. While there is still an element of calorie and nutrition control, we relax the diet slightly and allow them to have a few more treats than they usually would.
To balance things out, we apply a stricter period before and after the occasion. So during Christmas, we focus on increased exercise and a more controlled diet before and after, to prevent any negative impact on the people we support and to ensure they feel included in the festivities.
W: Like our other specialist Prader-Willi syndrome services, at Mason House make tweaks to the menu over Christmas, but still include many of the calorie-controlled nutritional meals that each person we support needs. We swap out some of the snacks, like crisps for instance, and replace them with things like mince pies so it feels more festive.
What challenges often occur for the people we support during Christmas?
W: One of the most common challenges we face during Christmas is when some of the people we support go home to visit family, and their structure isn’t followed as strictly. We advise families as much as we can but it’s difficult for them to follow the same routines we do with food. When back at home, many of the people we support will have easier access to food, and the amount of calories they consume will likely increase.
When they return to us, it’s likely they’ve gained some weight. Because we understand the complexities of Prader-Willi syndrome, we anticipate this and make gentle adjustments. We reintroduce structure to their meal plan again, making some tweaks to support their weight management.
S: When we relax the meal structure slightly during Christmas, we sometimes see an increase in challenging behaviour. Due to their condition, the people we support don’t feel full from eating, so they’ll constantly want more. When we tell them that they’ve eaten enough, they struggle to accept this, and it can sometimes cause distress.
We also check portion sizes are equal for everyone to ensure they feel fairly treated.
How do you plan Christmas routines to ensure everyone feels comfortable?
S: Many of the people we support with Prader-Willi syndrome present similarly to those with autism. They thrive on routine and a structured patterns – especially around food. When it comes to organising Christmas, it’s a shift in routine for them that requires a lot of thought and planning.
We always aim to keep routines as normal as possible. Sometimes we just put a festive spin on an activity they’re familiar with. For example, the people we support like to get involved with preparing foods they eat and might do a baking activity, so we replace cakes with mince pies.
We agree our Christmas plans in advance, so each individual has the time to process it and feel comfortable with new meal plans and activities. Each and every one of the people we support are involved with the planning and they vote for their favourite activities.
Having a notice board in the home is also beneficial. It gives everyone a place to find all the dates of our festive activities and they can count down the days until Christmas!
W: When we plan to attend community Christmas events, we take our own pre-prepared meals with us. Buying food with multiple people can become tricky, especially with managing portion sizes.
For instance, buying some chips isn’t as straight forward as it sounds. The people we support would compare portion sizes with each other, and if someone has slightly more chips than someone else, it would upset them. Taking our own food puts us in control and ensures everyone is happy.
We also maintain exercise plans throughout Christmas. Not only is it important for their health and weight management, but it also gives them structure. Many of the people we support enjoy exercise… it gives them fresh air and sets them up for the day ahead!
What does Christmas Day look like at a specialist Prader-Willi syndrome service?
W: Because the people we support have a preference for routine, we’ll make small tweaks to their routines on Christmas Day, but not enough to cause concern or stress. We aim to structure it the same as any other day.
Small changes could be replacing a juice drink with a sparkling drink during dinner, or applying a festive theme to a regular activity, such as arts and crafts.
S: At Esmer House, it’s very much the same process of keeping routines familiar on Christmas Day. However, we do host a Christmas party in the evening where the people we support and their teams get together and take part in activities such as karaoke.
We also don’t limit them to a traditional Christmas roast. They get to choose what meal they fancy, and we tailor the day around them. Some alternatives we choose are pizza and chicken goujons! It’s their Christmas, so we give them the freedom to enjoy it in a way that’s meaningful to them.
For those that can’t return to their family home, how do you manage their emotions during Christmas?
W: We have a person we support who doesn’t have family and Christmas can sometimes be a difficult time for them.
This is where the power of person-centred care really comes in. We’re all one big family at Mason House – but we don’t just stop there. We work with individuals to learn what activities brings them joy and tailor things to them, so they feel a family vibe with us.
It’s all about keeping them active with their interests, and doing the things they used to do with their family. Simple things like cooking them a Christmas dinner and playing fun games goes such a long way.
With the festive period just round the corner and a new year on the horizon too, we’re extremely excited to continue building long lasting memories with the people we support. Each and every one of them are achieving new goals and there’s much more to come!
Find specialist Prader-Willi syndrome support near you!
To find out more about our specialist Prader-Willi syndrome support and how we can help you, a client, or a loved one over the festive period and beyond, complete our quick form and a member of the team will get back to you.
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