My ongoing rehabilitation journey – self management wards 3 and 4, WGP

This booklet provides useful guidance, practical advice and helpful strategies that will help in your rehabilitation and life after being discharged from hospital.

Self management is part of your rehabilitation journey after hospital discharge. You will be will be supported to develop the skills to manage your own condition, moving towards increased independence and wellbeing.

Some of the strategies mentioned in this booklet I still use 17 years after leaving hospital. They are an important part of my everyday life. They have helped me cope with moving on in the world and helped me manage my difficulties after discharge.

I acquired a brain injury in 2003. After neurosurgery and a stay in the General Hospital I went to Hunters Moor neuro-rehab hospital (which later became Walkergate Park). Initially I required physiotherapy, speech therapy, occupational therapy and clinical psychology.

• In physiotherapy, I was shown how to do certain physical exercises, and given a small guide.
• In occupational therapy, I learned practical living strategies for coping with managing tasks both in the house and outdoor life.
• Clinical psychology demonstrated and practiced with me, how to use technology to help find a way around my cognitive problems.

During my rehabilitation, therapies did effectively help me to practice self management. Staff were caring, helpful and fully supportive. I continue to use strategies from all of my former therapies, except for Speech Therapy. After speech therapy, all that was required was practice: to talk more. This is something others may be less happy about than I was!

This booklet is an excellent easy to read, practical guide to Self Management.

Nicholas Hedley, Chairman of the Service User Forum

What is self-management?

Following your discharge from Walkergate Park, it is an essential part of your rehabilitation journey to self-manage your neurological condition, but what does this mean?

It means giving you the skills, knowledge and information that you need to help you make informed choices and decisions in your life, to manage your condition better. This aims to improve your overall health, wellbeing and quality of life.

This pack is designed to guide you to where you can find some of that relevant support, guidance, knowledge and skills. With the help from your friends, family, carers and professionals around you, we encourage you to take as many opportunities as possible, to get the most out of your rehabilitation journey.

• what information do I need?
• where can I get information from?
• what should I ask?
• who can support me?
• what opportunities are there?
• what can I do for myself?

My difficulties

A good start is to identify areas you may have some difficulties with during the day. This can be done with the help from others. Examples may be, difficulties remembering things, difficulties using your hand to hold things or difficulties with fatigue. See if you can make a note of them below.

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My goals

It is also important to have ongoing goals no matter how big or small they may be. This will help direct you to the type of support, groups or websites you might find useful.

The goals may be ones you didn’t quite achieve during your time at Walkergate Park. They may be goals already agreed with your inpatient or community therapists, or they may be goals that you set yourself.

For example, to complete my exercises once a day, to attend a weekly peer support group, to ensure I have a rest on the bed each afternoon to help manage my fatigue. With help from others, have a go at writing down what you’d like to be able to achieve.

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Following your discharge from Walkergate Park, you may feel a range of emotions. We hope that you feel positive about taking the next step forwards in your rehabilitation journey, however you may also feel worried or anxious or maybe low in mood.

Everyone reacts differently to events and changes, in the way that we think, feel and behave. It’s important that you take care of your mind as well as your body and to get further support if you need it.

Self Help Guides

Our Trust provides 23 self help guides that can be downloaded or listened to at www.cntw.nhs.uk/selfhelp

Some of the subjects they cover include: stress, sleeping problems, panic, health anxiety, depression and low mood, alcohol and you.

 Headway Brain Injury Identity Card

The Headway Brain Injury Identity Card is designed to provide people with brain injuries with added confidence in everyday social scenarios. Each card is personalised, helping the card holder to explain the effects of their ain injury and request any support they may need.

Search for ‘brain injury identity card’ at www.headway.org.uk

Some examples of when you may want to show your card include:

• in a shop
• using the bus
• struggling to communicate what you mean.

Mind

Mind provides advice and support to empower anyone experiencing mental health difficulties. Some of their guides cover where to find help, bereavement services and finding peer support with others in similar situations.

Visit: www.mind.org.uk                    Call: 0300 1233 393

Email: [email protected]                  Text: 86463    

Samaritans

The Samaritans offer a safe place for you to talk any time you like, in your own way, about whatever’s getting to you. They won’t judge you or tell you what to do, they’ll listen to you.

They are available 24 hours a day, 7 days a week.

Telephone free on: 116 123

Email: [email protected]

Write: Freepost SAMARITANS LETTERS

Website: www.samaritans.org/

In a crisis

If you feel that you are struggling with your mental health please speak to your GP. If you are experiencing a mental health crisis the contact numbers for the local crisis teams in the useful resources section.

Relaxation, meditation and sleep resources

There are many online websites and phone/tablet applications to help you manage your mental wellbeing. The following are a few examples of well recognised apps, however some require a subscription. You could ask a family member or carer to assist you in finding and downloading these. You may be able to find others for free. Have a search to see what you can find.

Calm: An app for rest, meditation and sleep. www.calm.com

Headspace: An app making meditation simple, teaching you life changing mindfulness in just a few minutes a day. www.headspace.com/

The Happiness Trap: An 8 week online programme to help you reduce stress, relieve anxiety and overcome depression.  https://thehappinesstrap.com/

Relaxation Techniques – Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust:  Audio files of relaxation techniques that can help relieve stress and gain a sense of well-being. Available in both male and female voices. www.cntw.nhs.uk/relaxation

Why exercise?

Regular exercise helps to keep your body healthy and prevent other diseases such as heart disease, cancer and diabetes. Exercise produces chemicals in your brain which help improve your mood. It can also help you to sleep better (www.NHS.uk). Exercising and staying active will help you to maintain your current levels of function and for some people it may allow you to continue to improve.

How much exercise?

The Department of Health guidance is that everyone should aim to do:-

• about 20 minutes of exercise every day or five 30 minute sessions, which equals 150 minutes of exercise each week.
• 2 days a week should include strength and balance activities.

 What can I do?

There are lots of different options for staying active:

Gym programme: (at home or locally) Many have adapted equipment, instructors and schemes for exercising in a supervised way (speak to your GP about a referral to Exercise on Prescription)

Exercise in water: swimming, walking in the ewaters or specific exercises

Exercise in sitting or lying eg seated exercises in a chair or wheelchair

Everyday tasks eg gardening or housework

You may have already been provided with your own personalised exercise programme from your physiotherapist at Walkergate Park or in the community. If so, it is best to follow this as it has been specifically tailored to you.

Chartered Society of Physiotherapy (CSP)

‘Love Activity, Hate Exercise?’ Is a campaign by the Chartered Society of Physiotherapy, giving advice and guidance on how to become more active, whether at home or in the community.

www.csp.org.uk Follow this link and type Love Activity, Hate Exercise in the search box. Select the first option with this title.

Activity Alliance

This charity is dedicated to supporting members and disabled people to make active lives possible. The website talks about many aspects relating to exercising and being active with a disability with ideas and links for other organisations to contact for further information. They are part of the English Federation of Disability Sport.

www.activityalliance.org.uk/

If you have any concerns or questions about exercising, your abilities or limitations you can always discuss this with your GP or physiotherapist.

What approach should I use?

• Setting reminders. on your phone to do your exercises regularly may help you to carry them out. Or you could link them with a daily task such as after going to the toilet or when you first get up.
• Be realistic. Find a way of exercising that you enjoy. That way you are more likely to keep it up.
• Start small. Set yourself small goals and focus on those ‘wins’. You can easily build up from there.
• Pace yourself. Little and often is much better than doing all your exercises at once, although this may work for some.
• Don’t give up. Stay positive and remember how far you’ve come rather than focusing on what you haven’t achieved yet.

How can I exercise at home?

The following websites have videos for a wide variety of activities and exercises you can do at home.

NHS Home Workout Videos

The NHS has created 24 instructor-led videos covering aerobics exercise, strength and resistance, Pilates and yoga at beginner and intermediate levels. These workouts have been created by fitness experts and range from 10 to 45 minutes. Most of the ‘move more’ exercises are aimed at people who can stand.

www.nhs.uk/conditions/nhs-fitness-studio/

www.nhs.uk/oneyou/for-your-body/move-more/home-workout-videos/

We are Undefeatable

This site contains information for those managing a long term health condition. It gives guidance on finding out what works best for you, including activities and exercises around the home and in the community. It also provides links to YouTube exercise videos for all abilities.

https://weareundefeatable.co.uk/ways-to-move

Overcoming MS (Multiple Sclerosis)

Although this is an MS website, the exercises are suitable for people with other neurological conditions and a wide range of activity levels. There are videos for many different exercises: fitness, stretching and strengthening, and many are seated.

https://overcomingms.org/resources/exercise

The National Center on Health, Physical Activity and Disability (NCHPAD)

A collection of videos on YouTube for both adults and children. Examples include standing and seated cardio workouts, exercises for people who have had a stroke, strength activities using household items, high intensity workouts and much more!

Visit youtube.com and search for ‘The National Center on Health, Physical Activity and Disability exercise videos’

https://www.youtube.com/user/NCP

Exercise activities on Facebook

Follow ‘Active Newcastle’ on Facebook for some simple and effective tips on keeping active at home. Video exercise classes and other activities such as Tai Chi included. Anyone can access this, it doesn’t matter where you live.

Follow ‘Make movement your mission’ – 3 times a day short movement classes they call “movement snacks” with adaptations. (8am, Midday and 4pm)

Phone Apps

There are many phone apps that you may find useful. Here are just a couple of ideas:

Step Tracker: A free app on Android phones. It records steps taken like a pedometer. Also measures calories used.

Health: An iPhone app which records health data including the number of steps you take.

Wheelchair Exercises: This is an app regarding exercises and workouts in a wheelchair. All users of foldable wheelchairs, light weight wheelchairs and powered wheelchairs can do it.

When you leave Walkergate Park, you will be adjusting to new roles and routines in your life. You may find you become more fatigued during this adjustment. It might be difficult to do all of the things you want to do.

What is fatigue?

It describes an overwhelming loss of energy, a feeling of exhaustion. Many people experience fatigue following exertion (for example, after a busy day at work or doing exercise). Fatigue after brain injury or with other neurological conditions is different to this, it is more intense and long-lasting, and doesn’t always get better after resting.

Fatigue can worsen the difficulties linked to your condition, for example forgetfulness, irritability, slurred speech, slowed or ‘clouded’ thinking and distractibility.

What can I do manage my fatigue?

With time, you will learn to recognise the signs that you are becoming fatigued. You might also want to ask those around you for support – they could help you to notice things that you don’t always see.

Understanding your own activity tolerance and signs of fatigue takes

time and effort. But, by learning what works (and what doesn’t!) you will feel more in control and better able to do the things that are important to you. You will learn to pace yourself.

Signs of fatigue:

• yawning
• losing concentration / attention
• eyes feeling heavy, or eyesight blurring
• head feeling ‘fuzzy’
• ‘zoning out’ in conversation
• struggling with sensory input for example noise
• fidget / getting irritable
• limbs feeling heavy
• stomach feeling sick

Top tips:

Keep a fatigue diary for a week or two: record all of your activities and make a note of your energy levels through the day (eg. 1= no fatigue, 5=extreme fatigue)

Look for patterns and triggers.

Try out some of the strategies in the table below to see what helps you.

For further reading, Headway has produced an excellent resource called “Managing Fatigue After Brain Injury”, available for free on their website: www.headway.org.uk/media/6580/managing-fatigue-e-booklet.pdf

Reference: Malley D, Wheatcroft J, Gracey F. (2014). Fatigue after Acquired Brain Injury: a model to guide clinical management. Advances in Clinical Neuroscience and Rehabilitation. V14(2);17-19.

Memory difficulties are common amongst people with brain injury and other neurological conditions. This section is written to help you to remember routines and events in your everyday life.

Your occupational therapist or psychologist may have already given you tools to help you with your memory. Now is the time to practice using these strategies in your everyday life.

 Internal memory strategies

These memory strategies are ‘inside your head’. They are things you do that no-one else can see. Here are some examples:

• “I’ve lost my glasses!” Let me think… where have I been? When did I last use them?
• “Everytime I brush my teeth in the morning, I must remember to take my tablets”
• “Today is Wednesday. That means I must put the bin out tonight”

These strategies ‘take up space’ in your head.  You might fid it difficult to hold onto all of the important information you need.

External memory strategies

These are things that you (and other people) can see:

External strategies – or memory aids –  are very helpful.  They reduce the need to hold things ‘in your head’.  Everyday examples include:

• Making a shopping list
• Setting a timer / alarm
• Using a calendar
• Writing a to-do list
• Using reminders

Task: Which of these memory aids have you used in the past? Which do you think would help you now?

Taking information in

For information to be made into a memory, you must be able to:

• Pay attention to the information
• Make sense of it (information processing)

What can help me?

• Ensure a quiet environment during important conversations – turn off TV/radio to reduce distractions.
• Take notes of key details of conversations. Check with the person you are speaking to that you have understood correctly. Ask for information to be repeated or made simpler if needed.

Build strategies into your daily routine: Once you have decided upon strategies that work – use them regularly.  If you use an online or paper diary, make sure you check it at least every day when you wake up. Check it at the start of each week and each month so you can see what lies ahead and plan appropriately.

 Be organised: Using memory aids takes time and effort but it is worth it! A calendar (on paper or in your phone) is helpful to record an upcoming appointment. An alarm is helpful for things in the immediate future – for example an alarm that goes off when your washing machine cycle is done. Sticky notes can also be helpful as visual prompts.

Try to focus on a just one or two strategies at a time until they have become a habit.

For further reading visit Headway’s website www.headway.org.uk – search for “Coping with memory problems: practical strategies”.

References:

Headway (2017). Coping with memory problems: practical strategies. Accessed May 2020: https://www.headway.org.uk/ media/6817/coping-with-memory-problems-practical-strategies-factsheet.pdf

Malia, K. and Brannigan, A. (2007). Hero’s Journey: An educational group Curriculum. Brain Tree training.

Winson, R., Wilson, B.A. & Bateman, A. (eds). (2017). The Brain Injury Rehabilitation Workbook. The Guilford Press.

Do you have a smart phone or tablet device? 

Community access – using public transport.  Finding accessible venues.

Rest and relaxation – apps to help you relax and impove your sleep

Planning – everything from taking your medicine to managing grocery shopping

Managing finances – keep track of your spending; help with budgeting

Activities – brain games to help with attention, problem solving, vision and dexterity…

Education/symptom management – learn more about your condition

You can download apps onto your device. There are many apps that can help you with tasks in your everyday life.

MyTherappy provides a list of NHS-recommended, user-tested apps for people with acquired brain injury. Visit my-therappy.co.uk/

We can send also you a list of recommended apps – there are too many to mention on this page! Please speak to your occupational therapist or email [email protected] to request a copy.

Here is a list of just a few organisations and charities that provide support and advice to those with long term neurological conditions. You will be able to find out about other support groups on the internet with help from a family member, friend or professional.

Stroke Association – www.stroke.org.uk or call 0303 3033 100

The Stroke Association is a national registered charity offering support and advice to anyone effected by a stroke, including family and carers. It provides a wide range of services including information on the following:

General support

• Find social groups in your area, including outings, meals and quizzes.
• Peer support with other people who have had a stroke
• Advice for carers
• Stroke education

SIA (Spinal Injuries Association) – www.spinal.co.uk or call 0800 980 0501
The Spinal Injuries Association supports anyone who has been touched by spinal cord injury. They work to enable people to live a fulfilled life after injury. Their website has comprehensive advice and support including a telephone counselling service, vocational support and referrals to nurse specialists.

Headway (The Brain Injury Association) – www.headway.org.uk or call 0808 800 2244
Headway is a large national charity who aim to improve the understanding of all aspects of brain injury and provide information, support and services to people affected by brain injury, their families and carers.
General support

• Local social and informative groups. Headway runs a group every Tuesday evening at Walkergate Park 6pm-8pm. Friends and family are welcome and no need to book. Email [email protected] for more information
• Head injury solicitor directories
• Online communities allowing you to connect safely with others affected by brain injury
• Volunteering and fundraising information and ideas

MS Society (Multiple Sclerosis Society) www.mssociety.org.uk or call 0808 800 8000

The MS Society is the UK’s largest charity funding research and support for people living with MS, their families and their carers.

General Support

• Emotional support
• Keeping active and exercising. Exercise demonstrations (search their website for ‘exercise’)
• Local peer support groups in your area
• Online community support.

GAIN (Guillain-Barré and Inflammatory Neuropathies) – www.gaincharity.org.uk or call 07878 090965, 07877 982651, 07719 280965 9am-3pm, Monday to Friday

GAIN is the only organisation in the UK dedicated to helping people affected by GBS, CIDP and other inflammatory neuropathies. They offer information and help to support those affected by these conditions. Just some of the information and support they provide are listed below.

General Support

• One to one peer support
• Gain2gether provide opportunities to meet up both locally and nationally for organised events
• Travel insurance advice.

Finding information about your medical conditions is an important part of self-management. There is so much health information on the internet: you need to know what you can trust.

Where do I begin?

Using a search engine can be a litte overwhelming!

Try these trusted websites first. They contain reliable, regulated and safe information.

www.nhs.uk contains information on conditions, treatments, local services and healthy living.

Patient.co.uk uses the same information system that is used in most GP surgeries about conditions, symptoms and medications. Information sheets about most commonly used medicines are also available.

NetDoctor is a website run by a group of qualified health care professionals. It covers information on conditions, symptoms and medications.  It is set up to improve communication between doctors and patients.

Support organisations for specific conditions also provide useful information. See the section on Condition specific support for more about this.

Is it trustworthy?

Ask yourself these three questions:

Who?

• check the author/organisation
• check the ‘home’ or ‘about us’ sections
• use websites you recognise – such as academic, professional and NHS sites

When?

• Find the date the page was published/posted
• Be more wary of information more than 4 years old

Why?

• Why does this website exist?
• If it is a company trying to sell something, the information may be biased.

Adapted from: Great Ormond Street – www.gosh.nhs.uk/medical-information-0/medicines-information/finding-reliable-medicines-information-internet

Get the most out of your appointments

You may find this guide helpful to do alongside a family member, carer, friend or therapist (if you are seeing one) so you can get their perspective too.

 Before your appointment, think about the following:

• Why are you having this appointment?
• What are your concerns?
• What information do you need to give?
• What information do you want to be given?

What to take with me to the appointment:

• A list of your medication
• Any relevant letters
• This form or a list of your questions

During your appointment

You may want to ask some questions:

• Prioritise the questions you want to ask depending on the time you have
• Think about diagnoses, tests, treatment options and follow up
• Ask for copies of letters written about you
• Ask who to contact if you have any more concerns.

Make sure you understand what has been discussed:

• For example, you can say, “Can you explain again?” “I don’t understand” or “What it sounds like you are saying is…”
• Make sure you know what should happen next and who will do it and when.

During or after your appointment you may want to take action:

• Write down a summary of what you have discussed and what happens next – ask for help with this in the appointment if you need to
• Write down any further appointments, for example in your diary or phone.
• Put into practice exercises, strategies or suggestions that have been made.

Adapted from Department of Health Leaflet –

Preparing for my appointment.

Apps for wheelchair users or those with who need to consider accessibility in the community.

• iAccessLife – Users can rate and review locations they have visited based on the location’s accessibility based on the parking, seating, entrance and toilet. Available for apple devices only.

• Wheelmate is a free app that can be accessed by wheelchair users all over the world. It helps users to find parking spaces and toilets and you can add facilities to it as you find them, to assist others. Available for Android and apple devices.

• If you are a wheelchair user and need an adapted toilet facility with a height adjustable adult-sized changing bench and hoist this website can show you where they are near you. changing-places.org/find_a_toilet.aspx

If you need urgent help with your mental health you can get in touch 24 hours a day on either the freephone number, or text number if you are Deaf and/or have hearing difficulties. If you live in:

• Cumbria call: 0800 652 2865

Text number: 07795 656 226

• Newcastle or Gateshead call: 0800 652 2863

Text number: 07919 228 548

• North Tyneside or Northumberland call: 0800 652 2861

Text number: 07887 625 277

• South Tyneside or Sunderland call: 0800 652 2867

Text number: 07889 036 280

If you or another person have been harmed or are at immediate risk and require an emergency response, call 999

Crisis Teams for other areas

• Redcar/Cleveland – 01642 838 300
• Darlington – 01325 552 230
• Durham – 0132 555 2230
• North Durham – 0191 441 5738
• Middlesbrough – 01642 680 706

SHOUT for support in a crisis

Free 24/7 support for people in crisis: www.crisistextline.uk/

Text SHOUT to 85258 in the UK to text with a trained Crisis Volunteer.

Further information about the content, reference sources or production of this leaflet can be obtained from the Patient Information Centre. If you would like to tell us what you think about this leaflet please get in touch.

This information can be made available in a range of formats on request (eg Braille, audio, larger print, easy read, BSL or other languages). Please contact the Patient Information Centre Tel: 0191 246 7288

Published by the Patient Information Centre
2023 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

Ref, PIC/821/1223 V5 December 2023

Review date 2026