These days, we are all encouraged to develop a healthy lifestyle, eat well and take plenty of exercise. How does Sense support deafblind people to live well and what are the challenges this brings?

With all the concerns about the rise in obesity, heavy drinking and the toll our stressful lives are taking, the theme of `healthy living’ is very much in the air. But what do we mean by this, and how does this affect the lives of the deafblind people?

This is a huge topic, and we cannot do justice to all deafblind people in this short article. We have chosen to focus on the experiences of people born deafblind – many of whom also have physical and learning disabilities.  We will also focus mostly on diet and exercise rather than medical and emotional health issues, important though these are.

Ok, first the science bit, and then I’ll go on to describe some of the great work that Sense is doing in this area!

What do we mean by healthy living?

The World Health Organization says that "health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity". This is a good starting point, but we need some more practical guidelines for our everyday lives.

It is generally agreed that for a healthy lifestyle, people should eat a varied diet, with food from the four main groups:

• Bread, pasta, cereal, potatoes and other starchy roots
• Fruit and vegetables –at least 5 portions a day
• Milk and dairy products
• Meat, fish and/or meat alternatives such as eggs, peas, beans, soya and nuts. (1)

We should avoid too much fat (especially saturated fat), sugar and salt; not drink too much alcohol or smoke. In Sense’s services, each person’s religious and cultural preferences around food should also be respected.

Everyone should also be as physically active as possible. This builds muscle strength and fitness, encourages better mobility and balance, increases appetite and burns up calories. It also helps prevent conditions such as constipation, heart disease and osteoporosis and has been associated with better mental health.

The Mental Health Foundation have produced a useful poster which makes the link between our physical and emotional health and suggests ten ways to look after our well-being: keep active; eat well; drinking sensibly; keep in touch with friends and loved ones; talk about your feelings; ask for help; take a break; do something you are good at; accept who you are; and care for others.

State of the nation

There have been numerous initiatives to encourage us to adopt a `healthy lifestyle’ in recent years – partly driven by concerns about the growing number of people who are obese (25% of all adults by 2010 (DoH 2004)).

(2) There is also a lot of evidence to show that people with learning disabilities are prone to weight difficulties, whether being overweight or underweight.  For example, in 2005, Emerson identified that 27% of people with learning difficulties aged over 16, who lived in supported housing in the in the North of England,  were obese (3). A recent study suggested that “the increased rates of obesity amongst young adults with learning disabilities are linked to living in poorer households, increased dependence on others, lower levels of activity and overeating to compensate for boredom, social isolation and behavioural problems.” (4)

Many of the people with congenital deafblindness that Sense supports also have medical conditions to cope with, such as the later effects of congenital rubella syndrome, including diabetes. Quite apart from the ill-health that these conditions can bring, they can also make it more difficult for someone to follow a `healthy lifestyle.’  It may be more difficult for someone to take exercise for example, and their medication may cause side effects such as constipation.

Another major factor is that people with congenital deafblindess often find it very difficult to communicate and make informed choices about how they would like to live their lives – including the food they would prefer to eat.

Supporting healthy living across Sense

All of this may seem to paint a rather daunting picture – but as you will see, there are many initiatives going on across Sense to promote healthy living for the deafblind people. Sense has always had a strong commitment to promoting personal fulfilment and responding to each person’s particular needs – and this very much extends to the food people choose to eat and the activities they want to follow.

Melton House in Rotherham for example, is a resource centre which supports 16 individuals with a range of sensory impairments and physical disabilities.  All have additional learning disabilities, and whilst some are able to express very clearly what they want, others have very limited communication.

“Our philosophy is to support each individual to choose the activities they like,” says Anne Telling who is the manager. “This leads to people getting a feeling of satisfaction, well-being and self-worth – which means that they are more likely to follow a healthy lifestyle.”

Each person who attends the centre has their own personalised care plan which sets out their needs and preferences, such as the activities they enjoy and the food they like to eat. The goal is always for the deafblind person to participate in this process as fully as possible.

Debbie* for example has very clear ideas about how she likes to spend her time and the food she prefers. She is somewhat overweight though and is being supported by a dietician to address this. Debbie is very motivated to get her weight down but is also determined to carry on eating chips, so a compromise has been reached – she still eats chips but in much smaller portions. “It’s a lot to do with using negotiation skills to create flexibility,” says Anne, “knowing when and how far to push.”

There are also many physical activities offered at Melton and in the local community, including: swimming, gardening, going shopping, massage (both giving and receiving), bowling and dancing.  In some cases, individuals have a health condition, such as arthritis, and they are encouraged to take part in a more gentle and time limited form of exercise.  

“One woman who joined us was quite nervous and withdrawn in the past and also quite overweight,” says Anne. “She now comes to the centre every day, and chooses to swim regularly. She has also joined a social group and enjoys baking now.  As a result her confidence has improved, she joins in activities more and she is much fitter.”

Sometimes, it will not be possible for the deafblind person to be closely involved in putting their care plan together, although staff and others can often deduce, through careful observation, what that person seems to like and dislike. The Mental Capacity Act states that it should always be assumed that an individual has the capacity to make an informed decision, unless it can be shown that they are unable to do this. In these cases, all of the people who know the individual well – such as their family, Melton House staff, social worker, and medical practitioners come together to agree what is in the `best interests’ of  the individual concerned.

“Melton House has a duty of care towards the people it supports,” says Anne, “including ensuring that healthy, nutritious food is offered. So we offer a choice of healthy meals.”

“One man that we support has no formal communication. Each day he is offered a choice of a warm or cold healthy meal. And staff try to ensure that his meals follow a regular pattern over the week, so that hopefully he will have more of a sense of what is coming.”

People are also supported to walk up to the shops, buy the food, prepare it, cook it and then clean up afterwards. Developing communication skills and making choices are also an important part of this process.”

What do you like to eat?

Nicky Jukes, who use the services at Melton House, spoke through sign to Anne Telling, about what he likes to eat.

Anne: Do you like to eat food that is good for you?
Nicky: Yes

Anne: What are your favourite meals?
Nicky: Sausage and Chips

Anne: Is this healthy?
Nicky: No

Anne: How could you make it healthy?
Nicky: Change it to sausage and mash

Anne: Do you sometimes want to eat things that aren’t good for you?
Nicky: Yes, chips

Anne: Is there anything else?
Nicky:(grins, this means yes)

Anne: What about sweets and chocolate biscuits?
Nicky: Yes

Anne: If you only ate these things, what would happen?
Nicky: Not good

Anne: Do you like to do exercise?
Nicky: Yes

Anne: What is your favourite?
Nicky: Treadmill, chest press, walking, hydro

Anne:   How do you feel when you are healthy?
Nicky: (gives a big grin)

Anne: Do you feel good?
Nicky:Yes

As this conversation went on, Nicky also mentioned that he likes sprouts, which Anne grows in her garden. So next year, Nicky is going to have a go a growing sprouts at Melton House.

The challenge of choice

As well as providing accommodation and support to deafblind people in Sense residential services, Sense also supports 28 people who have supported living services. This is where people live in their own homes and receive 24 hour support from Sense.

As at Melton House, each individual has a care plan which is negotiated, as far as possible, with their involvement. In some cases, where someone lacks the capacity to be closely involved, a group of people who know the individual well will plan in their best interests.

In many cases though, the individuals who have chosen to be supported in their own homes are very much able to make decisions about how they wish to live their lives including how they wish to spend their money. One of the advantages of living in Supported Housing is that people can claim benefits, which means that they have more disposable income.

For people to have much greater autonomy, and control over their lives is a very positive development, but it can cause dilemnas for the staff who are offering support. For example, suppose someone chooses to eat a very poor diet and take little exercise? Is this something that staff should try to do something about, and if so what?

“Many of the individuals we support have moved from residential settings and now have much greater independence,” says Karen Elsbury, who manages some of Sense’s supported living services. “Making this transition from a more structured and regulated environment to one where you have routines can be challenging.

“It’s a bit like when young people go off to college, which can give them a real sense of pride and freedom.  But they also have to learn how to live in a new way, and of course they can make mistakes and sometimes make poor choices.  The people we support are no different – they need to live and learn like we all do.

“One of the roles of the support staff is to help individuals to develop a sense of balance. In terms of healthy living, staff can advise and counsel and negotiate – for example they might suggest going to the gym or taking up line-dancing, but they they mustn’t take over.”

She gives the example of Claire*, who remains determined to eat a vegi-burger, cheese and chips every day, despite encouragement to try a more varied diet. However, with Sense’s support, she now also goes swimming every day which she loves.

“As well as being very good exercise,” says Karen, “this has given her other social opportunities so that her confidence and self-esteem have grown, which may mean that she chooses to eat more healthily in the future.”

All of us need a bit of encouragement and support to eat the right foods and take enough exercise and all of us slip up sometimes, or even quite a lot! And Deafblind people are no different.
* The names of these people have been changed

The trim new Kanhai 

Kanhai Powell decided that he wanted to lose weight and started going to Slimming World three years ago. He has won 'man of the year' in 2009 and 2010, and over a period of two years has lost three stone. During this past year he has struggled a little and put approximately half a stone back on, but he has maintained his overall two and a half stone weight loss. Kanhai enjoys his weekly sessions and takes part in the weekly discussions and raffles etc.

Karen Barr spoke to him recently about this.

Do you like going to slimming world? Yes
How do you feel about losing weight? I feel happy
Do you want to lose more weight? Yes
Do you like healthy foods? Sometimes
Do you want to eat more chips, cakes and biscuits now? Sometimes!
What is your favourite exercise? Walking

References

Physical Health of Adults with Intellectual Disabilities. Edited by Vee P Prasher and Matthew P. Janicki
Blackwell Publishing 2002

Eating well: children and adults with learning disabilities. By Dr Helen Crawley. The Caroline Walker Trust 2007

Emerson E (2005) Underweight, obesity and exercise amongst adults with intellectual disabilities in Northern England, Journal of Intellectual Disability Research, 49.

4  (Melville CA, Cooper SA, McGrother CW et al (2005) Obesity in Adults with Downs Syndrome.
Journal of Intellectual Disability Research
Health, well-being and congenital rubella syndrome
A Sense and Sense Scotland practice sharing event, 6-7 March 2009, Crewe, England

© Colin Anderson