Jenny lives in a Sense house and has quite complex eating and drinking difficulties – she has limited ability to chew and tends to tip her head backwards when she swallows, both of which bring an increased risk of choking and aspiration (food going down the wrong way). Despite having many physical limitations, Jenny is fiercely independent and hates being different from other people. There’s no question that supporting Jenny’s dignity and choice means that her food needs to look and taste like everyone else’s, as far as possible. 

 

“Our aim is to reduce the risk of choking and aspiration,” says MSI Practice Advisor Vikki Richardson. “So in Jenny’s case, and following advice from speech and language therapists, I advised staff to cut off bread crusts and avoid high risk foods like sweet corn and peas. I also suggested they provide plenty of sauces or gravy on her food so that it’s as moist as possible, and help Jenny to cut things up into small pieces. That way her food looks like everyone else’s and she can enjoy it with minimal risk.”

 

Vikki is one of a specially-trained team of ‘Dysphagia Practitioners’ who advise and support Sense staff on any issues related to eating and drinking. Each practitioner supports about 20 – 25 people, assesses their eating/drinking difficulties every six months and draws up very precise, individualised guidelines as to how staff should support them at mealtimes. Vikki’s advice on Jenny follows a thorough assessment of her needs which involves not only information gathering from the staff in her home but also observation before, during and after mealtimes to assess the nature of her difficulties.

The specialist Dysphagia Practitioners are just one aspect of how Sense is tackling eating and drinking difficulties across all Sense homes. The Dysphagia Project, led by speech and language therapists Sophie Morsley and Ellie Dodd, aims to raise awareness among all frontline staff of the risks, and to train a number of Sense staff, to varying levels, to enable people to eat safely and get more enjoyment out of their meals.

 

Assessment and management of eating and drinking difficulties are the province of NHS speech and language therapy services. According to Sophie, these services are often excellent but in places they are stretched and not available to give the regular assessments that people living in Sense homes need. The Dysphagia Project offers a back-up to the NHS service and works in tandem with it.

 

As Vikki points out, people’s needs may change as they go through life. “Some issues are age-related, such as people developing reflux as adults, or developing a hiatus hernia; sometimes sensory processing difficulties may impact on eating and drinking. Dental problems can affect eating and drinking and if people have teeth extracted it can profoundly affect the way they eat.

 

Some people have degenerative conditions which affect their ability to eat and/or drink, or for unknown reasons people may develop aversions to particular food textures. That’s why we feel we need to assess some people every six months, though where the risk is assessed as low, we may see individuals only once a year.” 

 

The Dysphagia Practitioners undergo an intensive seven to eight months of accredited training that is re-assessed yearly. This enables them to carry out assessments, develop detailed guidelines for staff to follow and know when to refer to other professionals such as speech and language therapists, dieticians, occupational therapists and so on. Seven staff, covering the Midlands and South West, have now completed their training and advisors from the North and South East should complete their training in six month’s time. 

 

Sophie and Ellie also devised a screening tool that residential and community services managers can use to identify people who need to be referred to the NHS speech and language therapy service. The managers have web-based training to enable them to use this tool effectively. In addition, awareness training is now becoming available for support staff. In some instances this is provided in the workplace and can be tailored to a particular individual. “This is very practical,” says Vikki. “We give the staff different foods and ask them to think about which oral skills they are using to process the foods and drinks, and get them to feed each other so they have some insight into how it might feel”. Sophie, Vikki and Ellie also train holiday leaders and volunteers who might be supporting people they don’t know.

 

As Sophie Morsley points out: “People need a lot to be in place to enjoy successful mealtimes. They need good communication so they know what food is coming, good lighting, absence of competing sounds like the TV, the correct position for eating, plenty of time to eat and, of course, foods they enjoy. Staff need to be aware of foods that should be avoided if there’s a risk of choking and foods that people won’t eat, perhaps because they are unable to safely manage the texture.”

The Dysphagia Practitioners meet a wide range of situations in Sense homes. “Some people are fine, can safely eat a wide range of foods safely and simply need someone to keep an eye on them while they eat,” says Vikki. In other cases, Vikki supports staff to enable people to take responsible risks when they are competent to understand the risk – such as a man who likes eating crisps in his bedroom and has no eating or drinking issues. Others may need constant close support, or need to be fed by support staff.

 

Sometimes the solutions to problems are incredibly simple. “One man was confused by the flowery tablecloth and kept grasping the flowers thinking they were his cup. So we advised the staff to get a plain table cloth and that made all the difference. We also advise staff not to put white food on white plates, for instance, but to use colour contrast so people with useful vision can see their food. Other advice may cover special equipment that helps people to eat more independently, such as chunkyhandled spoons.” The emphasis is always on preserving people’s dignity and promoting independence at mealtimes: “We work with the speech and language therapist and staff teams to make the minimal amount of changes needed to manage the risk – perhaps by helping them to cut it up into very small pieces, so that people are eating as normal a diet as possible and can have the things they most enjoy,” says Vikki.

 

Some of the work is simply reassuring staff where there’s a grey area. One African-Caribbean man had been used to eating dishes like fried chicken (cooked on the bone) and staff were worried that he could swallow the bones. Vikki did a lengthy assessment and observed that the risk was minimal. “This man coped very well with chicken bones and was independent enough to manage it with limited risk, so I could reassure the staff that he could continue eating foods that were culturally appropriate and he enjoyed.”

 

The most common difficulty that Dysphagia Practitioners meet is, surprisingly, cramming food, which carries a high risk of choking. Cramming may be a response to sensory needs, as people crave more sensation from their food. Some individuals have another distressing problem – rumination (when food is regurgitated and chewed again). Vikki supports between five and eight such people on average. Rumination has to be tackled – it’s both antisocial and disastrous for teeth – but it’s a hard one to crack and Vikki will refer these people to health professionals such as GPs so that they can be monitored. “Sometimes people can be helped by reflux medication but sometimes they need support for sensory integration and occupational therapists can often help with that.”

 

Occasionally, Vikki supports someone with very complex needs. “There was one man whose difficulties were so severe that eating and drinking were very risky for him and his health really deteriorated as a result. He was seen by various health professionals, they decided the best way forward was a gastrostomy and he’s now tube fed during the day. His family were distraught at first, but now he’s properly nourished and hydrated he’s had far fewer chest infections, he’s much happier and alert and everyone has accepted this was the right solution for him. His family is a lot less anxious about him now and his anxieties about eating have greatly reduced.”

How do the support staff react to the challenges they meet? “It can be quite hard for them when we advise that certain foods should be avoided because of the risk,” says Vikki. “They can get very upset on behalf of the people they support. And sometimes it is very challenging to devise menus, within a budget, that people can eat safely. We ask them to avoid using cheap bread for instance, which can be dry and hard. But mostly staff respond very well to the advice and training and are creative at finding ways of enabling people to 

enjoy their favourite food.”

 

And that includes taking people into the community to enjoy local cafés, pubs and so on. One person who needs thickened drinks likes going to the pub, so his support staff always have a sachet of thickener with them so he can safely enjoy his pint of Guinness! And one pub is so accommodating that the kitchen staff blend a chosen dish for one individual who has to have a puréed diet.

 

Sense staff are also adept at finding ways of celebrating birthdays, Christmas and so on, when good food and good company go hand in hand. Vikki recalls a delightful tea party: “Everyone had brought or made cakes and custards, including soft moist options, and we all drank tea out of posh china teacups – it was lovely.”

 

Has the Dysphagia Project helped? Vikki has no doubt about that. “Our service has helped people to enjoy their food more. They used to really struggle, often coughing or choking through their meals and aspirating food, triggering chest infections that could go on for months. Now we see much more relaxed mealtimes, much less stress, fewer chest infections.” Anyone who has choked, had food ‘go down the wrong way’ or had a chest infection, will know that these are frightening but preventable. The project is making mealtimes safer for those who do not have the knowledge or ability to prevent these risks themselves.

 

Steve Rose, Head of Children’s Specialist Services, is tremendously proud of the Dysphagia Project’s achievements. “Everyone has benefited from this service and it’s great to see it being copied elsewhere. Even the NHS professionals welcome it as they see it as support for them.”