Services and support

Here you can find information about different types of services and support. These include services that other people with cardiomyopathy, or their family, friends and carers, have told us they have used and found helpful.

There are many other sources of help and support around mental health and emotional wellbeing available other than what we can cover here. You may like to talk to your GP or specialist about what services are available and what might be helpful for you.

If you have, or think you may have, a mental health condition, we would recommend that you consult a healthcare professional. 

“I don’t think anyone really appreciates how difficult it can be to seek out and
ask for emotional support. All the responsibility lies with us.”

Individual with cardiomyopathy

Jump to:
Your support networks
Talking to other people
Support groups
Helplines
Online support
Meditation and mindfulness
Self-management courses
Counselling, psychological therapies and IAPT
Community mental health services
Support for carers

Your support networks

Support doesn’t always need to be something ‘formal’, or to come from professionals, organisations or charities. Sometimes it comes from those around you: your family and friends. 

You may not feel comfortable or able to ask for ‘help’ or for people ‘to listen’. Or maybe you have particular people that you turn to when you need to talk things through. Perhaps there is someone who knows you and understands what you are going through, who listens and offers help and support. Sometimes you might need just a listening ear so you can off-load: you might not need someone to do anything else. Or maybe you would prefer just to meet and do something nice together, rather than focusing on how you are feeling, perhaps taking your mind off things that are worrying you.

Whether it is a chat on the phone, meeting for a cup of tea, or taking a walk in the park together, meeting friends can help you to feel supported and positive.

“I would not want to worry my family and feel that I should carry on.”
Individual with cardiomyopathy

Talking to other people

Many people with cardiomyopathy find it helpful to share experiences with other people. Often referred to as ‘peer support’, this might be through support groups and online support, meeting at conferences, reading personal stories in magazines, and having one-to-one contact online or by phone.

What peer support offers
Peer support provides help and support through sharing experiences. It can help people feel understood, less isolated and that someone really empathises on a personal level with what they are going through. It also helps to have a different perspective and discuss what strategies and support might be helpful. It is worth being aware that everyone’s experiences are different, and that what works for some might not work for everyone.

Availability and how to access services
There are different ways of accessing different types of support.

Useful contacts
Cardiomyopathy UK
We can put you in contact with other people through our support groups, online support, and information days and conferences. We have Peer Support Volunteers who you can speak with by phone, text or email. This includes people with the condition, younger people, and family members.

Read personal stories 
Meet our young people panel 

“There have been times when I have been so depressed I could not speak to anyone. Having an excellent volunteer with lived experience who chatted on the phone with my carer when I was unable to, was invaluable and kept us both going at even the worst times.”
Individual with cardiomyopathy

Support groups

Support groups are opportunities to meet other people and share experiences. They are often set up by organisations and charities, and may be run by volunteers. They usually meet regularly, and you may have to ‘join’ to attend (although they are usually free to attend).

What support groups offer
Most support groups meet in person (rather than online) and provide peer support: meeting and sharing experiences with people with similar conditions. Some groups have guest speakers at meetings, and may meet for social gatherings as well as more formal meetings.

Availability and how to access services
How often support groups meet will vary from one group to another. There is usually a group leader who will arrange the meetings, who can keep members up to date with information about meetings. Some groups also have Facebook pages where they will advertise meetings and where members can keep in touch between meetings. Most support groups do not need a referral to use them, although they may be recommended by a professional. You can find details by contacting individual charities that run groups, or your GP surgery may have information on groups.

“The support group was a lifeline.”
Carer of someone with cardiomyopathy

Useful support groups
Cardiomyopathy support groups
You can meet other people with cardiomyopathy, and family, friends and carers, to find out about the condition and share experiences. 

“My local cardiomyopathy group have given me so much support and
information I would be lost without them.”
Individual with cardiomyopathy

Helplines

There are various helplines available, for example:

  • for specific health conditions or disabilities;
  • for mental health concerns and support for individuals with emotional needs; and
  • for practical issues such as housing, benefits, employment or money issues.

What helplines offer
Helplines vary in what they offer including information, advice, emotional support, counselling, practical help, referrals and advocacy. It can be helpful to find out more about the service before you call. Helplines will usually describe the service they offer, who it is available to, and any cost (including call costs). You can usually find this on the organisation’s website or promotional materials (such as helpline cards or posters advertising their services).

Availability and how to access services
Helplines are usually telephone lines, but some also offer email and online access such as Live Chat (through a website). The cost will vary. Online services usually have no cost but using a helpline may: some are standard rate calls, others may be low-cost or free numbers from a landline. If you call from a mobile you may be charged for this. Opening hours will vary. Some are open only during usual office hours, and others are available 24 hours a day. Some may offer an answerphone or call-back service.

Most helplines do not need a referral to use them (although they may be recommended to you by a healthcare professional). Local helplines can be found through local services such as a library, community centre, health centre or social services. Details can also be found through the Yellow Pages and online searches.

Useful helplines
Cardiomyopathy UK helpline
Through our specialist helpline you can talk to our nurses for medical information and support, and to our advisers about benefits, housing and your rights at work. The helpline is there for you if you have the condition yourself or you are supporting someone who has it.

“I have learnt to seek out the right people for advice: GP for medical advice, private counsellor for emotional therapy, helplines have been absolutely invaluable for practical advice which then assists my emotional wellbeing.”
Individual with cardiomyopathy

Online support

Online support includes forums and social media sites such as Facebook and Twitter, as well as email and Live Chat. 

What online support offers
Online support may be from professionals, such as health and mental health professionals, or from ‘peers’ (people with lived experience). Many people get a huge amount of support by connecting with others online. Groups can be incredibly welcoming and supportive, help people to share experiences, and feel connected and part of a group. They also connect you to people who you would otherwise never meet. 

However, it is important to remember that people’s experiences are personal and may be very different to your own. People may be very honest and share experiences that are unhelpful or worrying. And some people may give what they feel is helpful ‘advice’ but without being qualified to do so. Some people also give medical advice which might be inaccurate or misleading. Some sites are ‘moderated’ which means that they have ‘ground rules’ which everyone has to agree to, and moderators will keep an eye on what people are saying and remove any upsetting or harmful posts.

Availability and how to access services
Online support is generally available 24 hours a day, 7 days a week via the internet, although email and Live Chat may only be available at certain times. Online support is free to access, although you may
have to join, or request permission to join, some groups.

“My biggest support has been through the Cardiomyopathy UK Facebook site as this has helped me to realise how many others are experiencing problems and helped me to believe that I am not ‘faking’ my illness.”
Individual with cardiomyopathy

Useful online groups
Cardiomyopathy UK Facebook page and closed group
The Facebook page is available to use by anyone but you will need to ask to join the closed group.

Cardiomyopathy UK children, young people and younger adults Facebook page and closed group
The Facebook page is available to use by anyone but you will need to ask to join the closed group. This is only available for young people aged 14 – 25 years.

“The online forums and social media support has been a lifeline for me, a safe place, people who understand the little things that feel huge. It is crazy to think that people I have never met and probably never will, understand me better than those close to me...”
Individual with cardiomyopathy

Meditation and mindfulness

Meditation and mindfulness are practices that promote relaxation and wellbeing by calming and focusing the mind. They can also help people to develop ways to deal with stressful thoughts and experiences. 

What meditation and mindfulness offers
Meditation is about ‘thoughtful awareness’. Although there are many different techniques, it focuses on clearing the mind, promoting a feeling of calm and relaxation, and aims to help with emotional wellbeing. Some forms of meditation are linked with particular religions or groups. Some people use objects such as candles, incense or prayer beads to help them meditate. Some use chants or music, focus on their breathing, or use ‘guided meditations’ (where another person talks them through a meditation. This might be in person or a recording such as a CD, MP3, podcast or mobile app).

Mindfulness is the practice of being aware of, and paying attention to, the present moment in time: your thoughts, sensations and the environment around you. Some people refer to this as ‘being in the moment’. It is a way of focusing on the present, rather than thinking about the past or worrying about the future. It can help people be more aware of their thoughts and feelings, identify ways in which negative thoughts come up and how they react to them, and find ways to change how they think and feel about their experiences. Some people use other techniques, such as tai-chi or yoga, as part of their mindfulness practice.

“‘Mindfulness apps’ have helped me.”
Individual with cardiomyopathy

Availability and how to access services
There are many free online courses, resources and apps. You can buy booklets and CDs or downloads of meditations for your personal use. You can find out about local courses online and through your local library. Courses might also be listed through local adult education centres or holistic therapy centres. You can also ask your GP or health centre if they know about any courses. Most courses will have a cost, and details should be available from the organisation or person running the course. You don’t need to be referred to these courses. 

Useful organisations and apps
BeMindful (opens new window)
A website about mindfulness, including online learning.

Buddhify app (opens new window)
This is a meditation app, offering custom-made meditations for mindfulness. There is a one-off cost of £2 – £5 to download this app, depending on your device. Search your device app store for ‘Buddhify’.

Headspace mindfulness app (opens new window)
This meditation and mindfulness app is available from Headspace. It is free to download but there is a cost for some of the content. Search your device app store for ‘Headspace’.

Insight Timer app (opens new window)
This app offers over 6,000 free guided meditations. This app is free to download. Search your device app store for ‘Insight Timer’.

NHS Choices (opens new window)
Has information about meditation and mindfulness.

There are lots of different apps available. Search your device’s app store for details.

Self-management courses

Self-management courses aim to help people develop the skills and confidence to actively manage their health condition. This includes managing the condition itself as well as the impact it can have.

What self-management offers
Self-management aims to give people skills and tools to manage their health condition, feel in control of their treatment, and the confidence to work with their healthcare professionals. Courses are also an opportunity to meet and share experiences with others. They are run for people with long-term health conditions and disabilities. 

Some self-management courses are specifically for carers of people with long-term conditions, and focus on helping the carer to manage their own health and psychological needs.

Availability and how to access services
Self-management courses are usually run by specific organisations and charities, or through local CCGs (Clinical Commissioning Groups). You can ask your GP or local hospital if there are courses running in your area, as you may need to be referred to a course. You can also look online on your local council’s website (try searching ‘health and wellbeing’).

Useful courses
Self-management UK (opens new window)
Self-management courses throughout the country for people with long-term conditions and for carers.

“While not explicitly about emotional wellbeing it does come into it. 
I found this course really useful and helpful.”
Individual with cardiomyopathy

Counselling, psychological therapies and IAPT

Counselling or psychological therapy is a type of therapy offered by trained counsellors (also called therapists), psychologists and psychotherapists. It is often offered to people with mental health conditions such as anxiety and depression, or anyone who has emotional issues that they want to work through. It is also helpful for people with long-term conditions if they are having difficulty managing the emotional impact of their condition.

The Improving Access to Psychological Therapies (IAPT) service makes counselling and psychological therapies available through the NHS, workplaces, educational settings and some voluntary  organisations.

What counselling and psychological therapies offer
Counselling and psychological therapies give you a confidential space to talk about and explore your feelings, particularly any difficulties, with someone trained to listen and to help. It aims to help you to identify ways in which you can come to terms with any issues, and develop coping strategies for the future.

There are different types of counselling and psychological therapies which offer different approaches. What is suitable for you will depend on what you want to get out of counselling. This is something that you can discuss with a counsellor when you are arranging counselling. 

Availability and how to access services
Counselling and psychological therapies are usually offered as a number of sessions. They can be one-to-one or in a group, and can be offered face-to-face, although some counsellors might offer sessions by phone.

“I spoke to my cardiac nurse who organised a course of counselling.”
Individual with cardiomyopathy

Your GP may be able to refer you for counselling or psychological therapy through the NHS, and this will be free of charge. You can also arrange to see someone privately, and there will usually be a cost for this (although some counsellors will offer a sliding scale of charges depending on your financial situation). 

In many parts of England you can refer yourself to IAPT services, and in some areas IAPT services specifically for people with long-term conditions are available.

Read more about IAPT services and how to find them from NHS Choices (opens new window)

When looking for a counsellor privately it is important to look for someone who has a formal qualification and is registered with BACP (see below), to ensure that they follow ethical standards.

“Basically I turned in on myself, I wouldn’t talk to anyone about it. 
I eventually spoke to my GP and a counsellor which helped immensely.” 

Individual with cardiomyopathy

Although not available everywhere, Clinical Health Psychology may be available. This is provided by psychologists who have specialist knowledge of physical health problems, such as heart conditions.
You can ask your cardiologist, specialist nurse or GP if this is available in your area.

Useful organisations
British Association for Counselling and Psychotherapy (BACP) (opens new window)
A professional body that sets standards for counselling and psychological therapies in the UK. It has information on the website and details of registered qualified counsellors.

“I visited my local depression and anxiety team who gave me helpful CBT* exercises.”
Individual with cardiomyopathy
*CBT is cognitive behavioural therapy – a type of counselling.

Community mental health services

Community mental health services (CMHS) are services provided by Community Mental Health Teams (CMHTs) to people in the community. These services are for people with serious mental health problems, and are provided by health and social care professionals such as psychiatrists, psychologists, psychiatric nurses and social workers. 

Children and adolescent mental health services (CAMHS) are available for people up to the age of 18 years. CAMHS is an NHS service which is available throughout the UK. These services are for young people with mental health problems, provided by professionals including psychologists, therapists and support workers.

What these services provide
These services offer specialist assessment of your needs, and work with you to identify suitable treatment and support options. This may include treatment such as medication or psychological therapies.

Availability and how to access services
These services are usually offered in GP surgeries or health centres, and some services may be offered at home. You need to be referred to CMHS by your GP or specialist, social services or IAPT service (see
page 37). CAMHS are accessed by a referral from a GP, teacher, parent or the young person themselves.

Useful organisations
Rethink mental illness (opens new window)
Provides information about mental health conditions, including CHMS.

Young minds (opens new window)
Provides information on CAMHS and how to access them.

NHS Choices (opens new window)
Provides information on various aspects of mental health services.

Support for carers

A carer is “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support” (Carers Trust). Being a carer can have a significant impact on a carer’s life, both practically and physically. And the emotional impact of being a carer can also be significant. 

Not everyone who supports someone with cardiomyopathy considers themselves to be a ‘carer’, but some may recognise themselves in this role more easily. It can be helpful to recognise when you are a carer, as there may be help and support available to you.

What help is available
There are various sources of help and support for carers, and some entitlements. To qualify for some of the services below you will need to meet certain entitlement criteria. Services include the following.

  • A carer’s assessment from your local authority supports any physical or emotional needs you have, and provides information on respite care and carer’s breaks.
  • Carer’s Allowance is a benefit for people over 16 and under retirement age who give at least 35 hours of care a week to someone who gets certain benefits.
  • Carer’s Credit is for people who give at least 20 hours of care but don’t receive Carer’s Allowance.
  • There are also sources of psychological support and counselling, peer support and self-management courses.
  • Some areas have carer’s centres, which offer practical help and advice and can signpost you to further sources of help.

Availability and how to access services
There are a number of national organisations that provide information, help and support. Local areas will differ in what is provided locally, for example through the local authority or social services. Some services are only available for people who provide a certain number of hours of care a week.

Read more about emotional and practical support for carers.

“I didn’t want to focus on me when I didn’t have the serious condition.”
Carer of someone with cardiomyopathy

Useful organisations
Carers Trust (opens new window)
Support and services for carers and young carers, including grants and local sources of practical and emotional help.

Carers UK (opens new window)
Advice on all aspects of caring, including help, entitlements and a forum.
Adviceline 0808 808 7777

Citizens Advice (opens new window)
Details of support and benefits for carers, including eligibility criteria.

Cruse (opens new window)
Emotional support for people who have been bereaved.

GOV website (opens new window)
Information from the Government on carer’s rights and entitlements (search for 'carers').
Carers Direct helpline on 0300 123 1053

NHS choices (opens new window)
Information about carer’s rights and the Care Act, as well as other entitlements including respite care and carer’s breaks  (search for 'carers').

You can also contact your local council or visit their website to see what help is available locally.

“It took the Carer’s centre to help ... They were brilliant...”
Carer of someone with cardiomyopathy

 

©Cardiomyopathy UK. October 2017