Patient nutrition: Hungry for change

The Patients Association helpline takes thousands of calls each year from concerned patients and relatives.

The worries raised are varied, but one crops up frequently: inadequate nutrition. The organisation has issued multiple reports on the topic, drawing attention to the three million people in the UK suffering from or at risk of malnutrition – the majority of whom are living in the community.

Malnutrition is associated with muscle weakness, fatigue, lowered mood and an increased propensity for illness and infection. It is also closely connected to long term conditions. Having a chronic disease can increase the risk of malnutrition and, importantly, being well nourished is an important way of better managing such a condition.

The silo problem

As Patients Association chief executive Katherine Murphy puts it: “There is a very, very wide range of people who could benefit from better nutrition and hydration – especially people with long term conditions.”

It is a view shared by NHS England which, late last year, issued guidance on the effective commissioning of nutrition and hydration. It cites National Institute for Health and Care Excellence (NICE) estimates that the identification and treatment of malnutrition has the third highest potential to deliver cost savings to the NHS.

The document tasks clinical commissioning groups with ensuring “commissioning intentions include a focus on prevention of malnutrition and dehydration”, urging “all commissioners to view nutrition and hydration as a priority and apply this guidance as appropriate within your commissioning responsibilities”.

The sense is that nutrition is currently given insufficient focus, particularly in the care of people living with long term conditions

That such an appeal was deemed necessary highlights the sense nutrition is currently given insufficient focus, particularly in the care of the 15 million people living with long term conditions. Cathal Daly suggests it is a classic example of a lack of joined-up working within the NHS and public services more widely.

“I think the big problem is nutrition and prescribing are in silos,” says the prescribing lead for Elmham Clinical Services in Norfolk. “We look at the prescribing cost, and the medicines management team are not able to tie that cost to the idea that somebody who has chronic obstructive pulmonary disease could do with more nutritional input [to improve their well being] – and actually that would benefit the whole health system.

“Someone needs to feel the benefit that, if you prescribe more nutritional support, then there’s less hospital cost. But at the moment, they are two separate areas: hospital costs, and prescribing costs.”

Dr Joe McGilligan agrees. A practising GP at a Greystone House Surgery in Surrey, he sees an NHS in which “we constantly try to push work and costs around the system”.

“One of my catchphrases is one public pound – be it health, social care or county council. Doesn’t matter who spends it; it’s our money and we should be spending it more effectively. That’s what we need to get to in the health service – the understanding that you might be very clever and pass the debt to another part of the organisation, but at the end of the day, we’re all going to be in debt and it’s the patient who suffers because of the professionals not being professional about it; not actually doing what they’re expected to do.”

Passing responsibility

He suspects nutrition is often the last thing on a GP’s mind “because there’s so much else they have to be dealing with that there isn’t time to do it”. He also fears there is a pressure on GPs to assume specialist knowledge on malnutrition rather than having the option to refer on.

“I was at a roundtable with a professional in nutrition who said: ‘If GPs knew more about this…’ and I had to stop them and say: ‘If I had a pound for every specialist who told me I needed to know more about their specialty, I’d have a million pounds’. Every single specialist wants me to know more about their specialist subject. I’m a generalist, and that’s why I refer to a specialist.

If patients have to wait years for the diet, and in the meantime they’re having seizures, it is costing the health service money

“The thing with nutrition is how do we get access to it – how do we get access to dietitians, and who’s responsible for the budget on it? Because for me that’s where the problem happens: because people pass responsibility down to the person who’s got the budget.”

Emma Williams knows first hand the challenge of getting access to dietitians. She spent five years asking doctors to try a nutritional approach to treating her son’s epilepsy, which was proving uncontrollable with medication. The ketogenic diet has been shown to help those with drug resistant epilepsy, but gaining support to use it remains highly challenging. Ms Williams feels it is an example of commissioners being short sighted – not appreciating nutrition can be a method of investing to save.

“Some of the children who go on the diet will become completely seizure free and medication-free. But if like Matthew they have to wait years to get access to it, and in the meantime they’re having thousands of seizures, then it is costing the health service money.”

The Patients Association is starting work on a new report on nutrition, specifically looking at the issue of long term conditions. Ms Murphy feels that until healthcare organisations genuinely take the issue seriously, “we will continue to read about high numbers of patients suffering with malnutrition”.

She too urges a more integrated approach, saying healthcare professionals need to communicate with one another more effectively and ensure patients are given a full, holistic assessment “looking at their special needs but also looking at whether they’re malnourished; whether they can swallow properly”.

She is convinced doing so will have benefits for quality of care as well as efficiency. “I think medical nutrition interventions could offer value for money in various settings, and certainly in long term conditions,” she concludes.

Case study: Epilepsy

Matthew Williams was just nine months old when he had his first epileptic seizure. By the age of seven, he was having hundreds a week and being bluelighted to hospital regularly. Despite being on a regularly revolving cocktail of drugs, medications were having no impact aside from causing unpleasant side effects.

“It all impacted life dramatically, and not only his life but the family’s,” explains Emma Williams, Matthew’s mother. “I have a younger daughter who couldn’t have friends round because they were scared of Matthew – because of the side effects of the medication, he had behavioural difficulties. His sleep pattern was all over the place, so the family was exhausted. It was constantly miserable, and the family broke apart. My marriage broke down, so I became a single mum with two kids.”

Ms Williams had first read about the ketogenic diet when Matthew was two years old, but the neurologist then treating her son was sceptical of the benefits. A special high fat, low carbohydrate diet, it changes the way energy is used in the body and was first cited as a potential treatment for epilepsy back in the 1920s.

It was not until Matthew was seven – and doctors had said if he lived past 12, then he would likely be in residential care – that he eventually gained access to the diet, via a clinical trial at Great Ormond Street.

Within two weeks of starting the diet, Matthew’s seizures had reduced by 90 per cent and within eight months he had been weaned off all his medication.

“He was a completely different child,” remembers his mother. “His quality of life got better, he was calmer, he was sleeping better, he was a relaxed, chilled out, loving little boy – all the violent behaviour went, all the screaming went, him and his sister have got a fantastic relationship. It literally changed all our lives.”

Saving on the hospital budget has a knock on effect to social welfare, education, it means parents can go out to work, earn tax, put it back into the economy because their children can go to school

Ms Williams admits committing to the diet was a little daunting at first, but she received support from a specialist dietitian.

“It took a little bit of extra time, an extra half hour in my day. But Matthew benefited so much that it was worth every little bit of extra effort I put in, because I got what was left of my son back. I’ve still got a profoundly disabled son, but he’s now 21, very happy, relaxed, not in a residential home, and living well.”

He is also helping others in a similar situation. Some 30 per cent of people with epilepsy find medication makes no difference, and in 2004 Ms Williams founded the charity Matthew’s Friends to increase information and support on ketogenic dietary therapies.

It draws on Matthew’s experiences, and particularly the difficulties he had in accessing the diet.

“It is hard to get access to dieticians – and you’ve got to have specialist dieticians that know the ketogenic diet to be able to do it properly,” explains Ms Williams. “I ended up staying with the clinical trial dietician for years – and you were only supposed to be under her a year – because no local dietician would take Matthew on. There was nowhere to refer him to.”

That’s why Matthew’s Friends runs its own training college. The KetoCollege trains teams in the complexities of managing ketogenic therapies for adults and children. The charity also runs its own clinics to treat patients, but they’re at capacity. So too are all other ketogenic dietitians in this country.

Ms Williams believes more resources should be put in, suggesting there is a big invest to save case – Matthew is now on just one drug, and “he has not been bluelighted into the hospital since the day he went on the diet”. It is also unnecessary for the diet to be a permanent change: most people can be weaned off it within a couple of years. But she argues commissioners are not looking at the big picture.

“The trouble is commissioners are all looking at their budgets today, and they’re looking at their own budgets, and if it doesn’t save their own budget then they’re not interested. Saving on the hospital budget has a knock on effect to social welfare, education, it means parents can go out to work, earn tax, put it back into the economy because their children can go to school. But everybody is just looking at their own budget for this year.

“And in the meantime there are a lot of kids suffering out there that don’t need to. And there’s adults out there whose lives could be turned around.”

Case study: Cancer

In more and more instances, caring well for someone with cancer is a case of looking not only at treatment but beyond.

According to consultant dietitian Anne Holdoway, good nutrition can form a key part of effective cancer care. “We know maintaining nutritional status helps patients get through treatment,” she explains.

“The better nourished someone is, the more likely they are to achieve their target for their treatment. Whereas somebody who becomes undernourished will often be in the group who then get toxicity from their chemotherapy. And they won’t therefore be given the optimum dose of their chemotherapy or radiotherapy because they develop toxicity issues during the treatment.”

With only 8,000 registered dietitians in the UK, it can be hard for patients to gain access to their specialist expertise

Nutrition does not only have a role to play during cancer treatment, however. “Nutrition can be a really powerful adjunct to supporting people over and beyond treatment to optimise quality of life, and their activities of daily living,” Ms Holdoway explains.

“So after treatment, we know a whole host of cancer patients will have taste changes, swallowing problems, taste aversions – so associations with certain foods that alters their food choices and their food preferences.

“You’ll see things like early satiety, so they feel very full after a couple of mouthfuls of food. Fatigue can be a big issue after treatment, and that goes hand in hand with nutrition: if you’re not well nourished and you’ve got muscle weakness because of weight loss, then you’re probably going to be more plagued with your fatigue.”

She adds: “Sometimes there are really latent effects – we see people two or three years after treatment presenting to a GP because they’ve got diarrhoea, and it could be something like lactose intolerance or small bowel bacterial overgrowth that relate to their original cancer treatments.

“The issue is often if they’re then discharged from the hospital, these causes may not be picked up in the community. And that’s where there’s a real role for dieticians who have specialist knowledge in these areas, and who will be attuned to these latent effects.”

With only 8,000 registered dietitians in the UK, it can be hard for patients to gain access to their specialist expertise. She feels these limited numbers could also explain why nutrition is not always embedded in care pathways for chronic disease.

“Because we’re quite a small profession, it can be difficult to get a seat at the table. You see it with NICE [National Institute for Health and Care Excellence] guidance: if there’s been a dietitian on the guideline development group, the role of diet will be mentioned.

“If a dietitian hasn’t been able to get onto the group, nutrition doesn’t seem to make it on to the guidelines. There’s a question of how we make ourselves heard when we’re potentially underrepresented.”

Case study: COPD

Joe McGilligan’s belief that nutrition needs to be a key component of care for people with constructive obstructive pulmonary disease comes from personal experience.

Dr McGilligan, a practising GP and the Local Government Association’s health and wellbeing champion, remembers how his father “faded away to almost nothing” as a result of the condition. “If you’re breathless, you can’t eat – you can’t chew, because you’ve got to keep breathing. So that’s why COPD patients lose weight.”

Losing weight rapidly leads to lost strength, and what Dr McGilligan characterises “as a spiral of decline”. “As soon as you start getting weak, your muscles get weak, and then you don’t breathe properly, and then you don’t exercise.”

It is why nutrition is part of the integrated care pathway Dr McGilligan has designed for COPD. “One of the things on there is to check height/weight – and have you referred to a dietician? It’s just an aide memoire.

“The healthcare professional just has to remember to refer, just needs to check someone has checked they’re eating and drinking properly.

“It’s taking in the whole person, and looking at every bit of their life to improve their wellbeing,” he adds.