Wider support networks

Support for people with respiratory conditions is available from several trusted sources, mostly third sector organisations.  Each of the links below opens in a new window/tab.

Key help lines for people with respiratory conditions and their carers

CHSS's advice line - Chest Heart Stroke Scotland's advice line is staffed by nurses, and provides support and information for people living with lung disease, their family and carers.  You can request booklets and factsheets to be sent to you.  Ring 0808 801 0899 between 9:30 am and 4:00 pm

Asthma + Lung UK's helpline - You can speak to a caring expert on Asthma+Lung UK's helpline about anything - from how to manage your condition, to going on holiday. Or just to say hello.  Call 0300 222 5800 on Monday to Friday, 9.15 am - 5 pm.  Or WhatsApp about Asthma on 07378 606 728 or email to: helpline@asthmaandlung.org.uk.  Visit www.asthmaandlung.org.uk/helpline to find out more.

Leaflets to download

Asthma + Lung UK - leaflets 

Chest Heart Stroke Scotland - publications - some publications are available in Polish, Ukrainian, Urdu & Punjabi at: translated booklets

Breathlessness Intervention Service - patient information leaflets

Websites

Action for Pulmonary Fibrosis - UK wide 3rd sector organisation which provides support and education and funds research and campaigns to raise awareness.  The organisation provides a support line on 01223 785 725 Monday to Friday between 9am and 5pm.

Asthma + Lung UK - UK wide 3rd sector organisation which is working to transform lung health and make sure it gets the attention it deserves.

Breathlessness Intervention Service (BIS) - at Addenbrooke’s Hospital, Cambridge - patient leaflets, audio and video about managing breathlessness.

Chest Heart Stroke Scotland (CHSS) - Scottish 3rd sector organisation supporting people and their families across Scotland with chest, (respiratory), heart and stroke conditions

MySelf-Management - MySelf-Management has been active for over ten years, promoting and supporting the vision of self-management of health for those living with long-term conditions. In broad terms, self management encourages and supports individuals to take greater responsibility for their own health and wellbeing and seek to live life to its full potential. It is about forging an equal partnership between the individual, health and other professionals and the community around them, to the mutual benefit of all.

My Lungs, My Life - a website created by a partnership including , CHSS and NHS Scotland with information and advice about asthma and COPD

NHS Inform - Scotland's national health information service has information about a wide range of illnesses, conditions, symptoms, tests, treatments, and healthy living.  This includes a section about illnesses, infections and disorders of the lungs and airways

Additional help lines in case you need more general advice or emotional support

Citizens Advice Scotland - or call 0800 028 1456 for free, one-to-one and impartial general advice on employment, housing, debt, benefits and consumer issues like energy bills as well as many other topics.  Open Monday - Friday, 9:00 am to 5:00 pm

Breathing Space - a confidential phone line for anyone in Scotland over the age of 16 who is feeling low, anxious or depressed - ring 0800 838587 - Monday to Thursday 6:00 pm to 2:00 am, Friday 6:00 pm to Monday 6:00 am  

Cruse bereavement care Scotland - national helpline (and online webchat) - ring  808 802 6161 - Monday to Friday 9:00 am to 8:00 pm, weekends 1:00 pm to 4:00 pm

MySelf-Management

Self Management eLearning from MySelf-Management - an online course, originally developed with funding from the Scottish Government’s Wellbeing Fund. This engaging and informative course was designed for people who are living with any long term condition.  The course is currently available free of charge to anyone living with a long term condition in the Highland local authority area.

The Highland Self Management Forum - a network to promote and strengthen self-management in Highland, which holds regular forum meetings.

Chest Heart & Stroke Scotland

Information and support - Find out more about your condition and learn how to manage it well at home. Read our online health information or download chest, heart and stroke resources.

Hospital to Home - CHSS provides one-to-one support for people with chest conditions (including Covid-19 and Long Covid), when they leave hospital, with nurses, support workers and volunteers making sure they don't have to recover alone and that they get the support they need to live life to the full.  Visit CHSS Services and Support to find out more.

Chest Heart Stroke Scotland staff and volunteers support people to do what matters to them. The support is aligned to the 8 areas of wellness and can be one to one or in groups, face-to-face or remotely via telephone or online. It can include support with physical activity, day to day tasks, hobbies, and general confidence building (nothing is too big or too small - from making a cup of tea to hill walking)

The 8 areas of wellness

ALISS (A Local Information System for Scotland)

ALISS is a digital system that helps communities work together to find and share information about local groups, organisations, activities and services that can support health and wellbeing.  Visit the ALISS website to search for groups in your area, or you can add your own group to ALISS to help other people find it.  ALISS is funded by the Scottish Government and managed by the Health and Social Care Alliance Scotland (the ALLIANCE) so is completely free to use for anyone wishing to add or search for information.

Managing wellbeing can take many different forms and ALISS therefore includes a wide range of resources that can help people to live well, including those that:

• Enable social connection
• Assist people to self-manage their long term conditions
• Support outdoor or physical activity
• Link to a range of practical support and
• Access digital technology or digital health and social care services.

Meeting with others living with similar symptoms and experiences can be a great support to you in learning to live with your condition. This is called peer support. Peer support includes opportunities to meet face-to-face, to join online groups, and to talk to over the telephone. Check with the organisations what they currently have on offer in line with Covid guidance.  Each of the links below opens in a new window/tab.

MySelf-Management 

MySelf-Management is a Highland based charity supporting people with long term health conditions to self-manage.

In-Person Living Better Groups - open to anybody with any long term condition in the Highlands.  Find out more at In-Person, and just go along to the next meeting or email ruth@myself-management.org beforehand.

Online Living Better Groups - social and wellbeing sessions for MySelf-Management members.  Find out more at: Living Better Online

Living with Long Covid in the NHS Highland area?  -  Self-Management eLearning course from MySelf-Management is currently available free of charge to anyone living with a long-term condition or Long Covid in the Highland local authority area.  Those living outside Highland should email info@myself-management.org or phone Joanne on 07462 171 369 to discuss options for accessing the course.

MySelf-Management Long Covid Facebook support group - This group is a supportive and safe space for anyone experiencing Long Covid to connect and share useful information.

Chest Heart and Stroke Scotland (CHSS) Peer Support Groups

Many people living with long-term chest conditions find it really helpful to connect with people who have had similar experiences.

Whether you want to find out more about your condition and how to look after yourself, or just fancy a friendly cuppa and a chat with people who know exactly how you’re feeling, CHSS's Peer Support Groups are the perfect place to meet like minded people.  Each group offers their own programme of activities, with everything from gentle exercise sessions to coffee mornings.

There are over 100 CHSS peer support groups across Scotland, currently 3 in the Highlands (in Inverness, Invergordon and Wick).  Find your nearest group at CHSS Peer Support Groups.

Asthma + Lung UK

Support for you - Support groups give the opportunity to make new friends and share your experiences and stories with others living with a lung condition, and Asthma + Lung UK has over 150 face-to-face support groups across the UK.  Unfortunately, there are currently no Asthma + Lung UK support groups in Highland,  (search for your nearest group at: face-to-face support groups), but Asthma + Lung UK also provides a range of online activities, including an online support group, condition specific support groups for Bronhiectasis, COPD and Long Covid, singing for lung health, mindfulness for lung health, and chair based zumba classes.

Living with a long term respiratory condition may impact on your personal relationship. Asking for help and communicating how you feel are key to learning to live with your condition. This section has some useful links about personal relationships and communicating with others who are supporting you.  Each of the links opens in a new window/tab.

Information about relationships

Relationships and asking for help - My Lungs, My Life

Information about living with grief and loss

Adult counselling and bereavement services - Highland Hospice

Bereavement support - Cruse Bereavement Care Scotland

If you have a respiratory condition it can be interesting and helpful to hear about other people's experiences of living with a respiratory condition. Each of the links below opens in a new window/tab.  Check out:

The Asthma + Lung UK blog for contributions from people with respiratory conditions as well as professionals.

Chest Heart & Stroke Scotland's Story Archive – stories from the amazing people who are living life to the full after a life changing stroke or diagnosis of a chest or heart condition

Some patients with respiratory conditions would benefit from assistance with activities of daily living, or from adaptations to their home, such as installation of a stair lift, walk in shower or handrails.  An emergency help button from Telecare, which you can press to call for assistance in the case of a fall or other emergency, can also provide reassurance. Find links to more information in this section.  Each of the links opens in a new window/tab.

Information about social care and occupational therapy services

Social care and health - Highland Council

Social work and adult social care in Highland - NHS Highland

Personal and nursing care - Highland Council

Occupational therapy (OT) - Highland Council

Information about telecare including an online self-referral form

Telecare - NHS Highland

You may not think of yourself as a 'carer' but if you are a partner, relative or friend of someone who has a long term health condition, and involved in their care, this term applies to you.  

You will find links to information which is relevant for both you and the person you care for throughout this Respiratory Resource Hub, but this section is specifically for you.  Each of the links below opens in a new window/tab.

General support for carers

Connecting Carers - a Highland support organisation for carers

Support for carers - Highland Council

What matters to carers across Scotland - a video from Health and Social Care Alliance Scotland

Care Information Scotland - a wide range of information about care in Scotland, including Support for Carers

Support for carers, family and friends of people with lung conditions

Caring for someone with a lung condition - Asthma + Lung UK

Supporting someone with breathlessness - help and advice made for family and friends of people with breathlessness

Information for carers - information and support for carers, family and friends of people with pulmonary fibrosis

Support groups - for carers of people with pulmonary fibrosis

Support for family and friends - support for family and friends of people with sarcoidosis

Information about living with grief and loss

The death of somebody you know or love is always difficult and may be devastating.  Support is available to help you live with your loss.

Adult counselling and bereavement services - Highland Hospice

Bereavement support - Cruse Bereavement Care Scotland

Help lines

Cruse bereavement care Scotland - national helpline (and online webchat) - ring  808 802 6161 - Monday to Friday 9:00 am to 8:00 pm, weekends 1:00 pm to 4:00 pm

Breathing Space - a confidential phone line for anyone in Scotland over the age of 16 who is feeling low, anxious or depressed - ring 0800 838587 - Monday to Thursday 6:00 pm to 2:00 am, Friday 6:00 pm to Monday 6:00 am