Pharmacy at Ins:PIRE

We hope you enjoyed the InS:PIRE programme. For some of you life is not (and may never be) the same as it was before ICU. That doesn’t mean it has to be worse - just different. The whole aim of what we are trying to do is empower you to take control of your own health and wellbeing. That means if you don’t understand something a doctor, nurse, physiotherapist or pharmacist (or anyone who works in the NHS) tells you, then you can ask. The Chief Medical Officer for Scotland is encouraging the ‘Choosing Wisely UK campaign’. This encourages all of us to ask the following questions:

 Do I really need this test, drug, treatment or procedure?

 What are the risks or downsides?

 What are the possible side effects?

 Are there simpler, safer options?

 What will happen if I do nothing? So what do we want you to remember from InS:PIRE? Both you and your families have had a traumatic time recently and this can leave some of you with symptoms suggestive of Post Intensive Care Syndrome (PICS). These symptoms can include anxiety, depression, not wanting to leave the house or meet people, avoiding friends, poor memory and sleep, having pain and feeling generally weak. Hopefully the lay summary and the discussion you had with the InS:PIRE doctor and nurse has gone some way towards explaining your illness and how long it will take to recover completely.

1  Remember your GP is your main source of help and advice. They have received letters from the hospital both about your original ICU illness and about what happened at InS:PIRE.  Please try to attend any hospital appointments that are made for you as they are also organised to improve your health.  Sleeping well, eating well and taking sensible amounts of exercise can all help with your recovery

Physiotherapy When you are very unwell in ICU, the nerves and muscles can also be affected leading to something called ICU-acquired weakness (ICUAW). You might have noticed that your thigh and arm muscles are smaller than they were before you went to ICU. You might still feel physically weak despite having been home for a while. This is a common problem. It occurs in up to half of the patients who stay in the ICU for at least one week. Some people find that it may take more than a year to recover fully from this weakness. Being so weak can make every day activities like dressing, feeding, bathing and walking difficult. It is easy to get frustrated - many people feel ‘the mind is willing but the body won’t follow’. Pacing is really important. You wouldn’t take all your medication for the week in one day and the same is true for exercise. Treat your rehabilitation like a tablet, you must do little and often rather than doing everything in one day and then being too tired and sore to do anything else for the rest of the week.

2 How do I Pace? Before being able to pace yourself you need to establish a comfortable time limit for activities, for example, can you walk for 5 minutes on the flat without too much pain? Whatever the activity, it has to be something you can manage on a regular basis, without experiencing an increase in your symptoms. From here you gradually increase. So you might start with 5 minutes a day of walking, in week 2 you might build this up to 5 minutes twice a day or instead go to 6 minutes everyday. It doesn’t matter how you do it. So, set realistic goals for your activities. Keep an exercise or activity diary so that you see this change over time. Continue doing these and other exercises as it will take time to build your strength and fitness up.

What if I have pain? Pain is a common problem for many patients after ICU. It occurs in many areas of your body and has many different causes. Whilst these problems can improve slowly over many months it is important you discuss your pain with your GP as they can help. This is particularly important if pain is preventing you from building your muscles back up by things like walking. For some people (but not all), the pain symptoms have gone away completely a year after hospital discharge.

Pharmacy You will have had a medication review to ensure that all your usual medicines have been restarted and you are not taking any medicines that you no longer require. You should know what medicines you are on and why. If wanted, you will have had a ‘medication passport’ completed. If someone alters your

3 medicines in the future, ask them to write it down in this passport booklet so you understand what has changed and why.

Psychology Many people have little or no memory of their time in ICU and this is often due to something called delirium. Delirium occurs when you are very unwell and the brain can’t lay down memories properly. This can lead to confusion, weird thoughts, flashbacks and nightmares. During the week 4 psychology session there was a discussion on common emotional responses after being in ICU, traumatic stress and processing trauma memories. Normally these symptoms improve over time and talking to other people can be useful. There are lots of other ways to find help and don’t forget, your GP is there to help you. Whilst patients often remember nothing, relatives remember everything. As soon as someone tells you your relative is critically ill you don’t eat or sleep well. By the time they get home your ‘tank’ is close to running on empty but that can’t go on forever. It is not uncommon for relatives to become a bit depressed or anxious once their relative is getting better. Again, recognise that this is common and make sure you see your GP if you find yourself struggling.

Finding Local Support and activities If you have access to the internet, you can search for things that might help you live well in your own community:

1. Visit www.nhsggc.org.uk/inspire Find the ‘ALISS Search’ on the right hand side

2. Enter a word for what you want to search for in the ‘keyword’ box and the place you want to find it in, in the ‘location’ box.

In the ‘range’ box, enter the number of miles from the chosen location you would be willing to accept results for. Click search.

4 Websites where you can access free self help information:

NHS Fife Moodcafe www.moodcafe.co.uk Northumberland Mental Health Services www.ntw.nhs.uk/pic/selfhelp South Glasgow Wellbeing Services www.wellbeing-glasgow.org.uk Scottish Association for Mental Health www.samh.org.uk

For emotional support:

Samaritans Tel: 116 123 www.samaritans.org.uk Breathing Space Tel: 0800 83 85 87 http://breathingspace.scot/how-we-can-help/need-to-talk/

NHSGGC Support & Information Service 0141 211 1524 http://www.nhsggc.org.uk/patients-and-visitors/health-information- centres/support-and-information-service/ This is here to support people in and beyond hospital on a wide range of topics. From health, lifestyle and wellbeing to money worries, accessing services including carers support and everything in between. Kiosks can be found on the ground floor in the QEUH; Royal Hospital for Children; Stobhill ACH and the New Victoria Hospital.

Carers Information Line 0141 353 6504 [email protected] This provides a single point of access for carers into their local services. They will work with them on their needs to allow them to continue to care. This includes information and advice, emotional support, money advice, access to

5 training, education and employment support, access to short breaks from providing care

Citizens Advice Bureau 03454 04 05 06 www.cas.org.uk There is a Citizens Advice Bureau in almost every community in Scotland providing free and confidential advice and information whoever you are and whatever your problem. They offer practical advice, negotiate on behalf of clients and even represent them formally, such as at tribunal hearings.

Critical Care Recovery www.criticalcarerecovery.com This website has been carefully developed to offer information, advice and support on recovery after Intensive Care.

Telling us what you think

If you have any feedback, good, bad or ugly (!) please let us know. If you want to get in contact at any time please remember we have a website: http://www.nhsggc.org.uk/inspire

We also have an email account that you can write to: [email protected]

Finally there is the tried and tested method of phoning. This isn’t always manned but there is an answering machine that you can leave a message on: 0141 201 8627