Critical care to home The rehabilitation pathway

Patient’s name

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Contents

3 Introduction

4 Physiotherapists

5 Occupational therapists

6 Speech and language therapists

7 Dietitians

8 Rehabilitation on the High Dependency Unit

9 Rehabilitation on the wards

10 Rehabilitation after discharge

11 Critical care recovery clinic

12 Bed exercises

14 Chair exercises

16 Your individual exercises

18 Goal setting

20 Personal goals

22 Your appointment and contact us details

23 Other sources of information

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Introduction

During and after your stay in critical care you may experience some of the following: muscle weakness; joint stiffness; pain; breathing problems; talking problems or weight loss. You may also notice problems with your memory, difficulty sleeping, and nightmares. These are all very common problems. There are many healthcare staff and therapists who work in critical care and they can help you with these issues. They have the knowledge and experience to help you improve. This booklet explains the rehabilitation pathway from critical care, through different areas of the hospital, to when you leave hospital. It explains what to expect in each area, what healthcare staff/therapists will be working with you and what their role is. There are exercises for you to do when your therapists aren’t with you. There is also an area for you to think about and write down your rehabilitation goals. Working closely with therapists should help you achieve your goals, and this will continue throughout your hospital stay and beyond.

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The following sections will tell you about the different healthcare professionals who will work with you during your recovery.

Physiotherapists Physiotherapists are there to help you to improve your strength and physical abilities. They will find where you are having difficulties and put together an exercise programme to help you where you need it most. They will set rehabilitation goals with you and make sure that you are working on what is important to you. In critical care physiotherapists are also there to help improve your breathing. This is mostly done by ensuring your lungs are working well and are clear of phlegm (mucus). This will allow you to take part in your physical rehabilitation more easily. They may use techniques like repositioning you in bed or a chair, walking, and/or some physical techniques. As you improve they can also help with decreasing the support you receive from the breathing machine and tracheostomy care, if these are part of your treatment. After you move from critical care to the High Dependency Unit (HDU) or the ward, the physiotherapists from critical care will speak to your new physiotherapy team and they will continue to work on your rehabilitation goals and help you get stronger.

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Occupational therapists When you have been critically ill, even simple tasks can feel difficult to do. Occupational therapists (OTs) work with you to help you decide the most important everyday activities that you want to return to doing. These may be for home, in the community or at work. They will help you to break down these tasks to make them easier for you. In critical care, OTs can look at different areas, including how you are able to move around, your memory and understanding and how you are able to focus when doing activities. They can also help if you have difficulties with communication or seeing. OTs are likely to play a larger role once you move to the ward. There they can help plan for when you leave hospital, organise any extra assistance you may need, and provide additional equipment.

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Speech and language therapists Speech and language therapists (SLTs) are involved in helping your communication, swallowing and help with weaning if you have a tracheostomy. They can look at your thirst, voice, speech and language and help you find the best ways to overcome any problems you may have. This may include the use of communication aids and ways to do things that might be easier.

SLTs might give you exercises or plans to help you communicate more easily. They will offer advice to your family and friends with the best ways to communicate with you.

SLTs can also help you manage your feelings of thirst and assess your ability to swallow your saliva, food and drink. They can advise on when it is safe for you to eat and drink and advise on the safest thickness and textures for you to eat and drink.

They may give you tactics or exercises to improve how you swallow and how to prevent swallowing problems (if you are at risk of getting them). If you have a feeding tube in your nose, SLTs will advise when it is safe for you to eat and drink normally so that it may be removed.

If you have a tracheostomy, SLTs give advice on how to manage your saliva and help you practice speaking. They also help the team make a care plan for your tracheostomy.

Your SLT will see you as regularly as you need them. This may be once a day or once a week depending on your needs.

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Dietitians Nutrition is a very important part of your recovery and rehabilitation. It is very common for critically ill patients to lose weight, especially muscle. You may have your food given to you as a liquid if it isn’t safe for you to eat and drink. This may be either through a tube in your nose (going into your stomach) or in your vein as a drip. Once you have recovered enough, soft, moist foods and snacks are usually given along with milkshake or juice style supplement drinks if needed. If you are not able to get enough nutrients by eating and drinking you may have food and drink during the day and then liquid food via a tube at night. When on critical care, it can be very common not to feel hungry or have a low appetite. You may also feel sick or food may taste different to you. You may not find it easy to eat as much as you need to get strong again, so dietitians have an important role to play on your road to recovery. Dietitians usually see patients a lot on critical care or high dependency units but usually a little less often once they are on a ward. Even when you are eating well again, it may take some time to build up your muscles and put on weight again, if you need to. It can often take months to years, rather than days to weeks.

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Rehabilitation on HDU There are different types of High Dependency Unit (HDUs) in the hospital. Each of them will have doctors that are experts in the care you need. HDUs are for patients who don’t need the very close attention of critical care, but still require more care than on a ward. Rather than the one-to-one nurses like on critical care, HDUs aim to have two patients to one nurse instead. As a result, the staff will encourage you to start doing more for yourself. On HDU you are likely be seen by a different team of therapists who will continue working with you on your rehabilitation goals. Your new team may even look at this book to see some of the exercises you have already been doing, and goals you have been working towards.

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Rehabilitation on wards From HDU you will move to the ward (or you may go straight to the ward from critical care if you are well enough) and you will be encouraged to do more for yourself. Rehabilitation will be focussed on improving your independence under the care of the ward’s team of doctors and therapists. You may be helped to try new equipment and exercises. These may feel tougher but remember that this is a good thing. It means that you are progressing and improving in your strength and abilities.

Your therapists will start planning for when you are ready to leave hospital and what you might need to be able to do to safely go home. They may start planning as soon as you arrive on the ward as this allows them to have everything in place and ready once you are medically well enough to go. The therapists will talk to you about this as they want to ensure they help you in ways that are safe and important to you.

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Rehabilitation after discharge If you have more goals to achieve when you are well enough to leave hospital, your therapists will talk to you about your options for you to continue the work you have put in. You may benefit most from going to a centre that is specially designed for rehabilitation, instead of returning home straight away. Your therapists will talk to you about these options if they feel it would help you. Services closer to your home are able to help continue your rehabilitation. They may come to visit you in your home, or you may need to visit them. Your therapists will discuss with you what the best option is for you and help to organise the care you need when you return home. Depending on what support you need to live at home safely you may not be able to leave the hospital until everything is confirmed and ready for you to go. The same applies for any equipment you need for you to be safe and help your independence at home. You may be given items such as walking aids, bathroom equipment, kitchen aids and/or equipment to help get in and out of your home. Again, your therapists will talk to you about the best options for you.

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Critical care recovery clinic After you leave hospital, you may be invited to return to our critical care recovery clinic to talk to some of the team from critical care that you may have met during your stay. This gives you the chance to talk about your experiences and memories of your time in critical care and ask any questions that you have. You will also be invited to visit the critical care unit again if you want to. There should be a critical care consultant doctor, specialist nurse, psychiatrist, psychologist, physiotherapist and occupational therapist present. After critical illness, you may be affected by fatigue, poor concentration, forgetfulness, reduced appetite, reduced exercise ability, sleeping problems, nightmares, or have difficulty readjusting to life at home again. This is known as Post Intensive Care Syndrome (PICS) and can affect both the patient and/or their families (PICS-Family). We encourage you and your friends/families to attend the recovery clinic to discuss how we can help symptoms like these. Any feedback we get, no matter how small or big you think it is, can always help us make our care better for our current and future patients. The physiotherapist and occupational therapists will talk with you about how you are managing your daily activities at home and they can give advice about any changes in your abilities. The team will ask you about any other issues you are experiencing now and give advice on how to work to achieve any new goals you have. If you need extra support, they may refer you to some of your local community teams to help you continue your rehabilitation and achieve your goals.

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Bed exercises These are some of the exercises that we recommend you practice on your own while you are recovering. Your physiotherapists will write which ones you should do and practice them with you so that you can then continue on your own.

1 Glutes Lie on your back with your legs straight. Tighten your gluteal (buttock) muscles by squeezing together. Repeat ____ times Hold for ___ seconds ____ times per day

2 Quads Tighten your thigh muscle as you attempt to press the back of your knee down into the bed. Your foot may lift away from the bed as your knee straightens. Repeat ____ times Hold for ___ seconds ____ times per day

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3 Heel slides Lying on your back, slide one heel towards your buttock to bend your knee. Hold a gentle stretch in this position and then return to original position. Repeat ____ times Hold for ___ seconds ____ times per day

4 Straight leg raise Lying on your back, straighten your knee and keep it straight, then raise up your leg with a straight knee. Keep the opposite leg either flat on the bed or bent with the foot on the bed. Repeat ____ times Hold for ___ seconds ____ times per day

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Chair exercises

5 Knee extension While seated with your knee in a bent position, slowly straighten your knee as you raise your foot upwards as shown. Repeat ____ times Hold for ___ seconds ____ times per day

6 Seated marching In sitting, lift up your foot and knee, set it down and then perform on the other leg. Repeat with one leg then the other. Repeat ____ times Hold for ___ seconds ____ times per day

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7 Toe raises Start with your feet on the ground. Raise up your forefeet and toes, as shown, and keep your heel on the ground the entire time. Repeat ____ times Hold for ___ seconds ____ times per day

8 Heel raises Start with your entire foot on the ground. Raise up your heel as you press your toes down and keep your toes on the ground the entire time. Repeat ____ times Hold for ___ seconds ____ times per day

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Your individual exercises

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Goal setting Setting your goals involves thinking about what you would you like to work towards and be able to achieve, as you get stronger. This can be any activity or task you can think of, no matter how big or small. For example getting yourself dressed; walking the dog; playing with your grandchildren. Throughout your hospital stay and as you progress your goals may change and develop. Your therapists will help guide you through how best to set and achieve your goals. Recovery can be a difficult process as you adapt to changes and differences from before, but working towards something that is important to you can help keep you motivated and focused. You may also wish to look back at the goals you have already achieved, to remember how far you have come. You can use the space below to write down some ideas of what goals are important for you. Your therapist can then help guide you on how these might be achieved. _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________

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You therapists will help you to make your goals SMART:

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Your appointment details

Critical Care Recovery clinic appointment

Date

Time

Contact us St Thomas’ Respiratory Physiotherapy office 020 7188 5089

Guy’s Physiotherapy office 020 7188 5110

Occupational Therapy office 020 7188 2073

St Thomas’ Speech and Language Therapy office 020 7188 5084

Guy’s Speech and Language Therapy office 020 7188 6223

Dietitian’s office 0207 188 9452

East Wing 1 Intensive Care Unit reception 020 7188 3365

East Wing 2 Intensive Care Unit reception 020 7188 2271

East Wing 6 Intensive Care Unit reception 020 7188 0780

Guy’s Critical Care Unit reception 020 7188 8857

Critical Care Recovery Clinic 020 7188 8070

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Other sources of information For more information leaflets on conditions, procedures, treatments and services offered at our hospitals, please visit w: www.guysandstthomas.nhs.uk/leaflets ICU Steps Founded by ex-patients, relatives and ICU to staff to support patients and their families. w: www.icusteps.org Critical Care Recovery website Researchers, patients, families and health care staff have developed this website to provide information on the different stages of recovery. w: www.criticalcarerecovery.com/

Pharmacy Medicines Helpline If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our helpline. t: 020 7188 8748, Monday to Friday, 9am-5pm Your comments and concerns For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS). To make a complaint, contact the complaints department. t: 020 7188 8801 (PALS) e: pals@gstt.nhs.uk t: 020 7188 3514 (complaints) e: complaints2@gstt.nhs.uk

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Language and accessible support services If you need an interpreter or information about your care in a different language or format, please get in touch. t: 020 7188 8815 e: languagesupport@gstt.nhs.uk NHS 111 Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day. t: 111 w: www.111.nhs.uk/ NHS website Online information and guidance on all aspects of health and healthcare, to help you take control of your health and wellbeing. w: www.nhs.uk Get involved and have your say: become a member of the Trust Members of Guy’s and St Thomas’ NHS Foundation Trust contribute to the organisation on a voluntary basis. We count on them for feedback, local knowledge and support. Membership is free and it is up to you how much you get involved. To find out more, please get in touch. t: 0800 731 0319 e: members@gstt.nhs.uk w: www.guysandstthomas.nhs.uk/membership

Leaflet number: 4907/VER1 Date published: March 2020

Review date: March 2023 © 2020 Guy’s and St Thomas’ NHS Foundation Trust

A list of sources is available on request