Independent support groups

As our patient, you can expect ongoing support from your doctors, nurses and other staff.  We also offer additional support and advice through our patient advice and liaison service.  There is also information and useful links to national support groups and disability support groups at the bottom of this page. 

However, many of our patients find they need continuing support in their lives outside the hospital, from people who understand their conditions.  If you are looking for help and advice, then an independent patients’ group might be the place to turn.

Many of these groups have been founded and run by our own patients and their relatives.  These are committed and determined people, many of whom have had their lives transformed by treatment at our hospitals and who now want to help others who are going through the same experience.

Below are contact details and short descriptions of some support groups.  The Trust has warm relations with our patient groups and through their work, they support us and our patients.  However, these are independent groups with their own aims and priorities – they are not run by the Trust and we are not responsible for them.

Friends of Royal Brompton Hospital

The Friends is an independent charity staffed entirely by volunteers that raise funds to support patients at Royal Brompton Hospital.  Read more about the Friends' work.

Harefield Hospital League of Friends

The Friends is an independent charity staffed entirely by volunteers who run the Refreshment Pavillion and raise funds to support patients at Harefield Hospital. Read more about the Harefield League of Friends.

Harefield Hamsters

The Hamsters bring together Harefield hospital transplant patients. They provide counselling and recreational and sporting activities for transplant patients and their families and carers to help rehabilitate patients and improve their quality of life.

Find out more about the Hamsters

Brompton Fountain charity

The charity is for the families of children who are being treated for cardiac and respiratory problems at the Trust. They organise support through a network of families who have been through similar experiences.

Find out more about the Brompton Fountain

Independent charities and groups providing support and advice for patients, their families and carers.

Heart:

British Heart Foundation

The foundation is a major fundraiser for research into heart conditions.  Their site contains authoritative information on treatments and living with heart conditions.

British Cardiac Patients Association

Provides support and information on cardiac matters, from the patient's perspective.

The Somerville Foundation: for patients with congenital heart disease

A charity providing information and support to adults who were born with a heart condition and their families.

Heart UK

A charity dedicated to preventing premature deaths through high cholesterol and heart disease.  Offers information advice and support.

Cardiomyopathy Association

A website providing information on the heart muscle conditions collectively known as cardiomyopathy.

Lungs and breathing conditions:

British Lung Foundation

The foundation is a major fundraiser for research into lung conditions.  Their site contains authoritative information on treatments and living with lung conditions and details of your nearest ‘Breathe Easy’ support group.

Cystic Fibrosis Trust

The group is involved principally in research rather than support, but their website includes information on the condition that sufferers and their families will find useful.

Asthma UK

A charity offering information, advice and support to asthma sufferers.

PCD Family Support Group

Provides information about primary ciliary dyskinesia and contact details for support for sufferers and families.

Breathe Easy support group at Royal Brompton Hospital

The Breathe Easy support group network provides support and information for people living with a lung condition, and for those who look after them.

Children:

Tiny Tickers

A charity that aims to improve the early detection and care of babies with serious heart conditions. The website is a source of information on prenatal heart disease.

Heartline

Offers help and support, especially from parents who have similar experiences, to parents whose children have been diagnosed with a heart condition.

Down's Heart Group

A charity offering support and information relating to heart conditions associated with Down's Syndrome.

Juvenile Diabetes Research Foundation 

Mostly of interest to researchers, but parents of children with type one diabetes will be able to find information on the condition and developments in treatment on this website. 

Children's Heart Federation

An umbrella group bringing together several organisations working for children with heart conditions.  They offer advice and information on conditions.

Others:

Carers UK

Brings together carers to ‘fight for equality and recognition’.  They offer information on your rights and benefits as a carer and campaign on related issues.

Gov.uk for disabled people

Gov.uk brings together UK government online services in one place. The link above leads on to information about government disability services.

Your care records in the NHS

The NHS is changing the way it holds patient records – eventually, they will be held on computer, making them easily available to staff who need them.  This change has caused some concern in the media and this website explains, from the NHS’ point of view, what the change means.

British Institute of Learning Disabilities

A campaigning group aimed at improving the quality of life for people with a learning disability.

Mencap

A learning disability charity working with people with a learning disability and their families and carers.

Contact a Family

A charity that supports parents of disabled children by putting them in contact with similar families who can help with advice and information.

The Breathe Easy network includes groups that meet in many different towns and cities in the UK. Through events like the annual Breathe Easy Week, Breathe Easy also works hard to raise awareness of lung disease and the problems it can cause. Breathe Easy logo

These groups provide informal, friendly discussions in a supportive atmosphere for local residents living with chronic lung conditions, and their carers. It is an excellent opportunity to share experiences about living with chronic lung conditions, whether attending for just one meeting or regularly every month.

Presentations are made by members of the Royal Brompton Hospital COPD team, in addition to guest speakers from inside and outside the Trust. Topics covered include inhaler technique, holidaying with a lung condition, latest research, and control of breathlessness.

Breathe Easy Kensington & Chelsea

Breathe Easy Kensington & Chelsea is a support group run by the British Lung Foundation for people affected by lung conditions including their friends, family and carers. 

We meet the second Tuesday of each month from 2.15pm to 4 pm.

Location: Clinical Research Facility, Royal Brompton Hospital (First Floor, Fulham Wing), Fulham Road, London, SW3 6HP

For more information, please call the BLF helpline on 03000 030 555 or email helpline@blf.org.uk 

You can also visit the British Lung Foundation website.