Blog: Who wants a sicker, shorter life?

“Making good lifestyle choices: eating the right foods, staying hydrated and getting enough physical activity leads to longer, healthier and happier lives. In Dimensions Cymru, we want to get better, quickly, at helping people make choices that lead to healthier and happier lives.”

Russ Kennedy, Regional Managing Director – Dimensions Cymru blogs

“I am asking our support teams and families to discuss this blog, read our family factsheet and think what they can do differently to better support people around healthy living. And I am reaching out to other organisations to share their insight, data and ideas. Let’s make things better, together.”

Investing in lives

People with learning disabilities die younger. On average more than 20 years younger than other people, and all too often from preventable conditions. Here in Dimensions Cymru we invest a lot of energy into supporting people to manage health conditions.  For example, good plans are being delivered wherever a person has a known risk of diabetes or constipation, and we’re working with individuals to reduce the over-prescription of psychotropic medication. By and large, we are pleased with the way we support people with known health conditions.

But what do we do to protect the health of people who don’t yet have a health condition? Why do we wait until there’s a significant issue before putting health related plans in place? We know that people with learning disabilities are much more likely than others to get heart disease, have a stroke, get cancer and to develop diabetes. We know that these conditions rob people of quality and length of life – even if the person is supported to manage the condition really well.  Shouldn’t we help people avoid these conditions in the first place, rather than just living with them as well as possible?

In particular, making good lifestyle choices: eating the right foods, staying hydrated and getting enough physical activity leads to longer, healthier and happier lives. In Dimensions Cymru, we want to get better, quickly, at helping people make choices that lead to healthier and happier lives.

We started with Body Mass Index. BMI uses your height and your weight to tell you whether you weigh too much, the right amount or not enough. The biggest risk is generally weighing too much, this is what can lead to sickness and early death through stroke, heart disease, cancer, diabetes and other conditions. Knowing your BMI is vital to help you manage your weight and avoid a number of really serious health conditions.

Our first telling finding was that we didn’t have an up-to-date height and weight record for about half of the people we support. Of the rest:

• 1/3 of people were about the right weight
• 1/3 of people were overweight
• 1/3 of people were obese

The bottom line is that some of the people we support in Wales are more at risk of getting sick and dying younger because of their weight and related lifestyle choices.

I’m not proud of this and I expect many learning disability support providers in Wales and elsewhere might admit to a similar picture.

We’ve had many discussions about the root causes. I’m sharing our candid thoughts as I hope it might prompt important conversations in your organisation too – together, I hope we can work towards some answers.

Issue 1: It’s not really a priority

The fact that we couldn’t easily lay our hands on information about everyone’s height and weight tells me that it is not something that we are thinking about enough.

While it’s tempting to think of covid as a way of explaining why we aren’t concentrating on this at the moment, it can’t excuse it, and we can’t carry on ignoring it. This is especially true now that we understand how being overweight can mean that a person gets much more ill if they do get covid.

Issue 2: Modelling the right behaviour

I can tell you all day long that smoking is bad for you, but if I tell you with a fag in my mouth, at best you’re going to get a mixed message. The truth is, for very positive reasons, that our colleagues are often influential role models in the lives of the people we support. However, that means if a much respected support worker often gets pasties for lunch, it is likely that the person they support will develop a pasty habit too…

I’m in tricky territory here. Who am I to tell my colleagues what to put in their mouths, and would I even want to do that? But let’s start by talking about role modelling and encouraging healthy eating amongst our colleagues.

Issue 3: Understanding healthy eating

It’s hard to model good lifestyle behaviours if you don’t know what that is. Everyone at Dimensions Cymru wants the best for the people we support and I don’t believe for a second that anyone comes to work with the aim of providing unhealthy food for the person they support. So when I visit a person we support and see 3 sausage rolls and a plate of grated cheese being prepared for lunch – it has happened – I may conclude that the support worker is trying to do the best for the person they support with the knowledge that they have got. That leaves me feeling worried for the health of the person we support and for my colleague.

It might be of course that the person has made and communicated an informed decision about what they want to eat. The Mental Capacity Act protects the right to make unwise decisions after all…

Issue 4: Making choices

Dimensions is proud that we support people to make choices and gain control over their lives.

The Mental Capacity Act absolutely protects the right of individuals to make unwise decisions; if they can understand the choice they are making, the alternatives, and the impacts and if they can communicate that to others. To be clear, if Flossie wants to eat pies whilst sitting on the sofa all day long, and she has good alternatives that she understands, and she understands the risks and consequences, then that is Flossie’s right just the same as it yours and mine.

However, not all choice-making is as simple as it seems. Did you ever go to a team meeting with a buffet and ‘choose’ to eat a shed-load of cake? How about the last time you felt lonely and ‘chose’ to eat your own body-weight in Pringles?

• Our ‘choices’ are influenced by our environments- for example what we (or someone else) stocks our fridge which has a very considerable impact on what we ‘choose’ to eat.
• Our ‘choices’ are influenced by what everyone else is doing. Try choosing a salad when the rest of the table is going for a dirty cheeseburger.
• Our ‘choices’ are influenced by our knowledge. If you don’t know that your breakfast cereal is about as nutritious as a black forest gateau, it seems like a pretty sensible choice.
• Our choices are influenced by how the question is framed. Who chooses a sicker, shorter life?

Our role as support providers has to be more than throwing our hands in the air and wailing ‘choice and control.’  We can use the environment, our behaviours and our knowledge to influence people to make healthy choices. We can help people make decisions driven by long term consequence rather than short term want. Let’s use every ounce of our ambition and courage to positively influence the choices and decisions that the people we support make; their lives and happiness literally depend on it.

What Next?

What are we doing about it? Well, Dimensions has recruited 24 nutrition volunteers (with another 25 in the pipeline) across England and Wales. They will support our teams to help individuals make positive choices around food & drink, and find and develop great resources. Natasha, who we support in Cardiff, lost 2 stone recently through this expert support.

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One of the people who took part in the nutrition programme is Natasha (29), who Dimensions supports in Cardiff. She had gained some weight during lockdown but thanks to a nutrition and exercise plan developed by volunteer, Nazmin (27), Natasha lost over two stone.

During the first meeting with Natasha and her team, Nazmin was informed that Natasha was pre-diabetic. This helped inform Nazmin’s approach and she worked alongside Natasha’s support team, sharing resources on diabetes and creating a low-sugar diet plan in order to help Natasha make healthier choices.

Nazmin explains:

“The plan had three main goals:  stay hydrated by drinking two litres of water a day, eat five fruits and vegetables a day, and do 30 minutes of exercise a day. It was really rewarding to see how effective this was for Natasha. She ended up losing more weight than we expected!”

“I’m very pleased with the progress Natasha has made. Natasha tells me that she feels better every day as a result of her weight loss. The biggest difference has been the impact on the staff; their knowledge and understanding has increased, and they feel that they can support Natasha and the other people in the house better. That’s a tremendous result.”

Nazmin is one of the student volunteers and is doing a part time Master’s in nutrition. Volunteering for the programme has been mutually beneficial to both Natasha and Nazmin, as she has been able to use the knowledge from her degree and put it into practice.

Natasha says:

“I feel much better in myself and I’m also proud of myself. I’ve enjoyed being involved.”

Over the next year, Dimensions plans to scale up the project to support 100 people by the end of 2021. In addition to one-to-one support, Dimensions, together with volunteers, is developing resources and training to educate support workers on different aspects of nutrition, with focus on specific health conditions such as heart disease, diabetes and obesity.

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Here in Cymru, we now know the average BMI for the people we support. We are working with support workers and the people we support to figure out how to get everybody talking and thinking about how to make a difference. I am asking our support teams and families to discuss this blog, read our family factsheet and think what they can do differently to better support people around healthy living. And I am reaching out to other organisations to share their insight, data and ideas. Let’s make things better, together.