CARERS UKthe voice of carers

Spotlight on

Caring and nutrition

2

1 Carers UK (2012) Malnutrition and Caring, London: Carers UK2 Elia, M. and Russell, C.A. (eds) (2009) Combating Malnutrition: Recommendations for Action, London: Advisory Group on Malnutrition, led by BAPEN3 Elia, M. and Russell, C.A. (2009)

4 Elia, M. and Russell, C.A. (2009)5 Carers UK (2012)6 Carers UK (2012)7 Carers UK (2012)8 Elia, M. and Russell, C.A. (2009)9 Elia, M. and Russell, C.A. (2009)

Intro

Summary

Nutrition is an important but often hidden issue for carers and their families, with 60% of carers worrying about the nutrition of the person they care for.1 People suffering from malnutrition can experience a variety of related health problems and it is likely to increase their care needs.

The vast majority of people at risk of malnutrition live in the community, on their own or with their families, so making sure that carers have the advice and information that they need about nutrition is a big issue for communities.

This briefing presents the facts about nutrition and malnutrition, outlines a new training scheme to raise awareness of nutrition and looks at what some local organisations and carers’ centres are doing to better support carers to manage nutrition and diet.

What is malnutrition?

Malnutrition can develop when someone does not eat enough food, or the correct balance of foods, to give their body the nutrients it needs.

This can affect their mood, growth, muscle strength, ability to fight infection, ability to recover from illness and many functions of the body.2

Why is nutrition important?

Good nutrition can help the body to maintain and improve strength, support the response to medical treatment, improve wound healing and reduce infections. Good nutrition can help people to stay mobile and maintain their independence.

What are the facts?

• More than 3 million people in the UK are either malnourished or at risk of malnutrition.3

• 93% of those at risk of malnutrition live in the community – in their own homes or with their family.4

• 74% of carers prepare all the meals of the person they care for.5

• 25% of carers care for someone who is underweight.6

• 55% of people being cared for use nutritional supplements.7

As well as having a high cost for individuals and their families, malnutrition is very expensive for the country. In the UK in 2007, public expenditure on disease-related malnutrition was estimated to be more than £13 billion.8

Malnourished patients have higher healthcare costs, with 65% more GP visits, 82% more hospital admissions and 30% longer hospital stays than patients who are not malnourished.9

Good practice: Bolton

Public Health Bolton has specific priorities that support the prevention of malnutrition, including Bolton’s Healthy Weight strategy and Bolton’s Ageing Well programme. It is piloting an early intervention programme called Staying Well that includes the identification of possible malnutrition and signposting or referring to relevant services.

“…health is important because it allows people to maximise their potential and enjoy a good quality of life.”

Free resources

for carers – see page 7

3

Case study: Pete

Pete, 60, cares for his wife Jill, 72, who has had several Transient Ischemic Attacks or “mini strokes” and has long suffered from depression too.

A couple of years ago Jill wasn’t eating, she felt really nauseous, had an upset stomach and just couldn’t face food. She began to lose weight. Pete had heard about oral nutritional supplements from other carers on the Carers UK internet forum so he bought some at his local chemist.

After Pete had bought them a couple of times, his pharmacist asked after his wife and informed Pete he could get them on prescription. Jill then got “great boxes of the stuff” prescribed. Pete says they “really helped” as Jill got over her sickness and back onto regular food.

“You have another person’s life in your hands and you become the judge of what to do for the best… I felt drained.” (Maryann, a carer)

“I find it really upsetting. You are watching someone disappear in front of your eyes. You just feel helpless.” (Pam, a carer)

Six out of ten carers worry about the nutritional intake of the person they look after.10

There may be many underlying reasons for malnourishment, such as nausea, problems with swallowing, medical conditions which impede the absorption of nutrients, and lack of appetite caused by illness or physical weakness.

Supported by Nutricia, a specialist nutrition company, Carers UK carried out a survey for a report, Malnutrition and Caring, about carers’ experiences of managing someone’s diet and nutritional requirements.

Over 2,000 carers responded. We found that carers looking after someone who is malnourished experience the following:

• higher levels of self-reported stress• anxiety, frustration, feelings of failure and guilt

that they are not doing enough

• feeling that they cannot cope and have no control over their lives

• dread around mealtimes, particularly if food goes uneaten and carers have low income

• the need to provide extra levels of care as a direct consequence of malnutrition.

Why is nutritionimportant for carers?

Action point

Do you regularly talk to carers about nutrition?

If not, could you begin providing information, such as leaflets? Could you invite an expert speaker to talk to carers in your area about nutrition and diet?

Turn to page 7 to find out more about how to order free caring and nutrition resources.

Case study: Pam

Pam is the main carer for her mother who had a stroke five years ago, and now suffers from dementia and depression. Her eating problems started when her dementia became more severe, and she stopped eating altogether.

Pam does not feel she has had proper help and support in dealing with her mother’s eating and nutrition. Her GP has not been very helpful. She also had problems with care workers because they had not been given proper instructions, so often did not give her mother a hot meal.

“I think she has a reasonably balanced diet but it is difficult to know if she always eats. If I had more support I could encourage Mum to eat more.”

10 Carers UK 2012

4

Intro

Caring in the community• Organisations in touch with carers can help

them understand the important role of nutrition in caring for someone.

• Medical staff, particularly GPs, can ensure that carers have the right knowledge of nutrition, referring them to dietitians where possible.

• GPs can have a malnutrition pathway in place to prevent malnutrition. For example, the ‘Managing Adult Malnutrition in the Community’ guidelines allow GPs to manage malnutrition according to risk category and include practical tips to aid clinical judgement.11

• Carers can pass on their knowledge and experience to other carers and encourage them to find out more about nutrition and how it can help.

• Care agencies and other people who go into people’s homes to provide care can spot the signs of under-nourishment or problems with nutrition and signpost these on.

• If families are providing care at a distance, better communication with care agencies can help the family to work in partnership and be reassured that the person being cared for is receiving the right nutrition and support.

• At the point of hospital discharge, an assessment of nutrition must be undertaken for all relevant patients to ensure that they, and the person they care for, have the right support in place to ensure the best nutritional outcome.

Raising concerns about external careOne of the Care Quality Commission’s (CQC) essential standards of care is ‘meeting nutritional needs’. This standard comes from legal regulations that services must comply with.

If you are concerned because a care home, nursing home or social care service is not meeting someone’s nutritional needs and you want to complain, these are the steps you can take:

1. Tell the home or service. Care service providers must have a complaints procedure that you can ask to see.

2. If the matter is not resolved and the care is funded by your local council, you can complain to your council.

3. If you are unhappy with the outcome from your council then make a complaint to the Local Government Ombudsman. You can also complain to the Ombudsman if you pay for the care yourself (i.e. it is not funded by the council):

www.lgo.org.uk/making-a-complaint

0300 061 0614

If you are concerned about a service then you can also tell the CQC about your experience. They do not handle individual complaints, but the information will help them to regulate the safety and quality of care services.

www.cqc.org.uk

Who can make a real difference?

Good practice: Wandsworth Carers Centre

Wandsworth Carers Centre finds that nutrition comes up a lot in support groups and in one-to-one sessions in relation to dementia, substance misuse, mental health and learning disabilities.

They refer people to local health trainers, occasionally have dietitians come in to speak to their groups and have given out Carers UK information leaflets on nutrition.

Good practice: St Mary’s Hospice

Birmingham St Mary’s Hospice gives advice to the people that attend their day hospice, including practical tips for boosting calorie intake and a leaflet to take home.

They have also provided workshops on a range of topics in the past, including on nutrition.

11 www.malnutritionpathway.co.uk

5

Eden Valley Hospice in Carlisle has set up a carers’ group in their daycare unit, devoting one of the sessions to food and nutrition and producing useful hand-outs. They provide demonstrations for people on smoothies, soft diets, how to make food look tempting and how to increase the calorie content of meals.

They also have discussions on problems that people have with eating, for example lack of appetite and nausea.

“I always try to emphasise the importance of the carer looking after themselves and making sure that they take time to look after their own needs… and of not feeling too guilty about enjoying their own meals.”

Some organisations and carers’ centres also say that they signpost carers to their GP and to local health organisations for more information on nutrition and healthy eating.

Many have identified the need for more information and advice to enable them to help carers meet the nutritional needs of the people they care for.

Action at all levels

With 93% of those at risk of malnutrition living in the community,12 nutrition is becoming an increasingly important issue for organisations working with and supporting carers.

It means that action is needed at all levels to ensure that carers have the right information and advice to handle care well and ensure that the person being cared for is getting the nutrition they need.

Some organisations have been taking positive steps to provide carers with the advice and information that they need. For example:

Surrey and Borders Partnership Trust runs a Carer Support Group for carers of mental health service users. Information leaflets are distributed and they have held a session with an expert speaker on mental health and nutrition.

“In our discussions about medication and staying well, nutrition is always mentioned as something that people struggle with.”

Kirklees Council provides awareness training on nutrition and hydration for staff working in care homes and domicillary care. This covers how to spot the signs of poor nutrition, what action to take and how to promote good nutrition, as well as signposting to experts and professionals such as GPs and dietitians.

“…they know that many of their client group are vulnerable and that it is important to ensure that people are encouraged to have a healthy, well balanced diet in order to maintain health and wellbeing.”

Swansea Carers’ Centre used a small grant from the Local Health Board to run a series of nutrition, healthy eating and cookery workshops where attendees could ask local health professionals questions about meeting the needs of the people they care for and themselves. “Healthy eating is something we try to actively promote within the Centre…”

Good practice: Monmouthshire Council

Monmouthshire County Council has displayed booklets on nutrition in GP surgeries and hospitals and in information stands for carers at events.

Their Carers Project has also provided nutrition training for carers.

Good practice: Carers Association Staffordshire

This carers association runs sessions and workshops that include information on nutrition. Occasionally they invite external speakers to talk about food and nutrition, provide leaflets on nutrition and teach people about food preparation and making simple meals.

What is being done for carers locally?

12 Elia, M. and Russell, C.A. (2009)

6

About the trainingCarers UK is working with Nutricia to raise awareness of the importance of nutrition. We have developed training on nutrition to get carers talking about their experiences of managing the nutritional requirements of the person they care for.

The course covers topics such as:

• understanding healthy eating and how nutrition can play a key role in keeping the body strong

• how to spot the signs of malnutrition

• practical hints and tips to help carers improve the diet of those they care for and themselves.

We have successfully piloted the course with carers and the response was overwhelmingly positive. We found that:

• After they had attended the training, 84% of people thought that nutrition was a very important issue for carers. Before the session, only 32% thought this.

• 71% of people said that they had a much better understanding of the nutrition of the person they are caring for as a result of the session.

• 87% of people said that they now know more about where to get advice about the diet of their loved one.

Learn to deliver training on nutrition

The course is designed to be easy to deliver. We offer sessions that “train the trainer” for people who would like to learn how to put on the course themselves.

If you attend one of these sessions you will get all the resources and help that you need to deliver training on nutrition in your area. You could then run the course multiple times for different carers’ groups around your region.

86% of people who attended the “train the trainer” session felt that the materials were very easy to use.

For more information about training and to sign up for a “train the trainer” session, visit our website:

www.carersuk.org/nutritiontraining

Training on nutrition

Good practice: Saint Francis Hospice

Saint Francis Hospice, which provides care and help to people in four London boroughs, has a specific nutrition group. It also has a carers group and they dedicate a teaching session to mouthcare and nutrition.

“I’m just starting to learn about the food needs of my husband so it was

helpful.”

“I now see how important diet is, particularly when medicines put my wife off her food.”

“I had never really stopped to think

about nutrition and its impact on my life as a carer. This training

course made me realise the worry I’d had over the years.

I would urge carers to attend the course so they know how to spot the signs of malnutrition and get some practical tips to help improve the

diet of the people they care for.”

Gill Doherty Chair of Carers UK Birmingham Branch

7

To order downloadable or printed versions of these free information booklets, visit:

www.carersuk.org/nutritionresources

Dietitians

Think about inviting a local dietitian to talk to carers in your area at a local group session. The NHS explains how to find a registered dietitian here:

www.nhs.uk/chq/pages/find-a-registered-dietitian-or-nutritionist.aspx

Training

Sign up to take part in a “train the trainer” course so you can deliver training on nutrition to carers in your area, free of charge. See page 6 for details or find out more at:

www.carersuk.org/nutritiontraining

Online resources

Our web resources include top tips and advice on improving nutritional intake:

www.carersuk.org/help-and-advice/care-with-nutrition

Carers can download a step-by-step guide to getting the best from visiting their GP. If they are worried about the nutritional intake of the person they care for then they can use Carers UK’s chart to make sure they are asking their doctor the right questions and know what steps to take if diet does not improve:

www.carersuk.org/help-and-advice/care-with-nutrition/talking-to-your-gp

Free information booklets

Carers UK and Nutricia have produced the following information booklets that you can order for free:

• The importance of eating well for carers• Eating well and dementia• The role of good nutrition when caring for

someone

How to take more action locally

Good practice: Bridlington Job Centre

Though not an organisation that would be expected to provide information to carers on nutrition and diet, Bridlington Jobcentre ordered Carers UK leaflets on nutrition to give out to carers.

e

About Carers UKAcross the UK today, 6.5 million carers are giving vital unpaid care for a family member or friend. Caring is part of life but without the right support the personal costs of caring can be high.As an organisation of carers, we understand what this is like and do everything we can to give carers the help and support they need to make life better.

• We bring carers together so they are not alone.• We provide expert information, advice and emotional support.• We give carers a strong voice.

Carers UK and NutriciaNutricia specialises in the delivery of advanced medical nutrition for the very young, the old and the sick.Carers UK is working in partnership with Nutricia to help improve understanding about nutrition and care. The partnership provides carers with information and resources on nutritional care for both themsleves and the person they care for.

CARERS UKthe voice of carers

Carers UK is a charity registered in England and Wales (246329) and in Scotland (SC039307) and a company limited by guarantee registered in England and Wales (864097). Registered office: 20 Great Dover Street, London, SE1 4LX

Order free resources for carers

Carers UK and Nutricia have produced the following information booklets that you

can order for free:

• The importance of eating well for carers

• Eating well and dementia• The role of good nutrition

when caring for someone

To order printed or downloadable copies, visit www.carersuk.org/nutritionresources

Carers UK

@carersuk

Stay in touchTo join us, support us or

access our online resources, visit:

www.carersuk.org