Wellbeing Service

Welcome to Wellbeing

Remember

Mental Health Conditions
don’t discriminate.

They can happen to
anyone,
anywhere, anytime.

What is wellbeing?

“The state of being comfortable, healthy or happy”
(Public Health. 2018).

Don’t worry if you missed the session, you can catch up with the recording below and download the presentation: Welcome to Wellbeing 

We have also developed an introduction to Mental Health Factsheet Factsheet 02 Mental Health Health

The data behind the headlines

Research published in 2022 by Rare Disease UK reports that more than 90% of study respondents felt anxious, stressed or depressed due to their rare condition, and that 36% of patients and 19% of carers had experienced suicidal thoughts. You can view the report by Rare Disease UK HERE

With many rare conditions often being complex, it not only has an impact on those affected but also on the wider family members too.

Study conducted by Spenser Tansley Et Al 2022

• Questionnaire of over 1200 people living with a rare condition and over 560 carers
• Investigating how having a rare disease impacted on an individual’s mental health
• 90% stated that they felt; anxious, depressed, stressed or worried
• 36% of individuals with the condition and 19% of carers stated that they wanted to end their life
• 23% of participants stated that the health care practitioners facilitated conversations about mental health including sign posting to services
• 1/2 of participants stated that mental health wasn’t mentioned at all in their health care appointments
• 88% stated that they had negatively been impacted by their interactions with health care professionals

Recommendations

• Need for more mental health interventions for those being impacted by rare disease and relevant signposting.

All About Anxiety

What is Anxiety?

A constant fear, worry or stress that interferes with your everyday life.

Remember

Anxiety doesn’t discriminate.

Feeling anxious can happen to
anyone, anywhere, anytime.

Some of the figures:

• In 2020 62% of people Worldwide stated that they experienced some form of Anxiety.
• Since the pandemic the number of people Worldwide who have experienced Anxiety rose by 25% to 301 million. (58% are children and young people).
• Women are more likely to experience an Anxiety Disorder 63% worldwide.
• Specific Phobia Disorder is the most common type of Anxiety Disorder, affecting over 19 million people in the US.
• In the UK, a little over 1 in 10 of us will be living with an anxiety disorder at any one time – that is over 8 million people.

Don’t worry if you missed the recent webinar session, you can catch up with the recording below and download the presentation: Wellbeing Webinar All About Anxiety Presentation

We have also brought together a Factsheet for you to download Factsheet 01 All About Anxiety

Mental Health and the Road to Independence

In this section, Melissa gives an introduction into mental health, our wellbeing and why our own independence or lack of it, can have an impact n our mental health.

This film is from the AS Global Conference – Mental Health and the Road to Independence.

Accepting and Connecting

In this film from the AS Global conference, you can hear from Marina, from AS Italy shares with us her experience of her Daughter receiving a diagnosis of Alström Syndrome and how this felt.

Marina shares her family journey of acceptance and resilience.

She encourages everyone to be the change they want to see.

Hear her top tips and uplifting quotes and phrases she has picked up along the way.

In this section you will find short videos, bringing together a range of techniques for you to try to help you, when feeling anxious, or when negative thoughts and feelings creep into your life.

We’ve brought a range of different techniques, so have a listen to all of them, as some you may prefer more than others…

The first one is the Love and Kindness, Breathing Meditation

The next one to listen to, is a Grounding Technique

The next session to bring you is all about a technique called 4 x 4 breathing and helps us control our emotions and breathing when we are feeling anxious and may be panicky and feeling out of control.

The next session is called the 4W’s 

The next one is a Tranquil Body Scan!

Creative Ways to Positive Wellbeing

In this section we talk about creative ways that we can promote our own wellbeing and methods that you can do anywhere, and don’t cost anything.

Enforcing positive mental health should be affordable and accessible for everyone, which is something that ASUK always champions.

Metawriting

Today’s article focuses on a technique called Metawriting.

A way of focusing on your thoughts, feelings and emotions that can truly work for you.

Metawriting is described as writing, either creatively or in an autobiographical way to help the writer navigate thoughts, feelings and emotions which may be difficult to verbalise.

Sometimes negative thoughts can become overwhelming, as the thought gets louder and louder, and bigger and bigger in our head, becoming all consuming.

A way of taking back control of our thinking, is writing and journaling. It can be a great way to work through any feelings you may be having before you talk to someone about it.
Using writing for therapy is also useful, as it gives you the space to decide what you talk about and process your thoughts, feelings and emotions about any given event. It’s up to you whether you write non-fiction or a poem or story that documents how you are feeling.

People who are already receiving therapy can use journaling to record how they feel after their session has ended. This allows them to develop insights into themselves and can help them reflect on the work they have done so far.

However you choose to offload, metawriting can be a real way of getting your thoughts, feelings and emotions, down in a way that echoes your innermost narrative. Whether you’re young, old or in between you can adapt exercises to work for yourself or your child.

Below is a poem Melissa wrote when she was struggling with negative emotions.

“I wanted to write a note to myself to remind me it was okay not to feel okay.”

It’s ok not to be okay

I know today’s been hard
And your inner light is dim
And your heart lies in broken pieces
Trapped deep beneath your skin.
I know your roads been tough
But you’ve walked it straight and true
Think of all the lights that shine,
And switch their brightness onto you.
Right now your blue skies turned grey
You’re scared you’re hurt you’re angry
But tomorrow is a new day
You’re safe with me my friend
Just remember in the end
It’s okay not to be okay.
I know that life has been unfair
What it’s done to you’s not nice
But if you turn your face to the wall
What was the point of that sacrifice?
I know you want to cry
To throw things, scream and shout
But I’m your friend, I’m here for you
Let all your feelings out.
Right now your blue skies turned grey
You’re scared you’re hurt you’re angry
But tomorrow is a new day
I am here for you my friend
But remember in the end
It’s okay not to be okay.

If you would like to learn more about how creative writing or journaling can work for you or a loved one. Please get in touch with our Wellbeing Coordinator, Melissa by email or phone. So that she can support you in your journey.

Email: Melissa.crowland@alstrom.org.uk
Tel: 07301 078059
Please note Melissa works part-time on a Wednesday and Friday.

Useful Apps

The charity Mind have developed a App Library of their trusted Apps.
It covers a huge range of different conditions; including mental and physical health.

We have brought together some Apps below – some are free and some are paid for, but many have free trials so you can see if you like them first.

Head Space

Offers meditation and sleep resources, it is a paid App but it does offer free trails

My Possible Self

Has interactive tools, helpful tips, and engaging activities to help you take care of your mental health. There are lots of meditation activities to help boost your mood and clear your busy mind, and interactive content to help you explore things that can influence your mental health. (free App)

Medotopia

Is a useful mindfulness meditation program
(paid App with free trials available)

Sleep sounds

App of sounds to help you sleep

The Mindfulness Ap

Presently

This is a daily gratitude journal

Slumber 

Relaxing bedtime sleep stories

You will find below a range of organisations who can offer a range of support, resources and services:

Mind

Mind offer support and information including useful guides on support and services available, you can view these here.

Young Minds

The charity Young Minds offer support and information for young people experiencing mental health challenges and their parents. They offer guides around support which can be found here as well as a beginner’s guide to the NHS’s Child and Adolescent Mental Health Services (CAMHS) for young people and parents, this guide can be viewed here.

RareMinds

RareMinds offer a Wellbeing Hub of resources and information.

Counselling Directory

The Counselling Directory enables you to find a suitable counsellor, and they are dedicated to making the process as simple as possible, providing individuals in need with all of the information they require to make the most well informed decisions. Counselling Directory aims to be the leading service for providing counselling advice and information – connecting those in distress with the largest support network in the UK. They understand how important it is to find the right counsellor, the one that is exactly suited to your individual situation, have a look on their website for further information of the counselling services available in your local area, as a general rule counsellors with more experience will be accredited with the BACP.

SUPPORT AND EMERGENCY CONTACTS

If you feel overwhelmed, or you want to hurt yourself or someone else, you can:

Text SHOUT to 85258 to contact Shout’s textline

Call HOPELINEUK on 0800 068 4141 or the NHS on 111 and select option 2

Contact Childline by using 1-2-1 chat or calling 0800 1111

If you feel like you may try to attempt suicide, or you or someone else is seriously hurt, this is an emergency. You should:

Call 999 and ask for an ambulance.

Tell an adult you trust and ask them to call 999 for help.