Patient Support and Community Groups

Patient support groups provide people living with the same health conditions with practical and emotional support – while community groups reach out to local people who have something in common, whether that’s culture, geography, language or faith.

Researchers who engage with both patient and community groups help to build trust and encourage participation, particularly among under-represented groups.

On this page you can find links to locally-based patient and community groups in the East of England, who are happy to consider approaches from researchers looking for feedback on their research from a particular group.

If you are a group organiser/chair of a patient support or community group and you’d like someone from our Patient and Public Involvement (PPI) team to visit your group and talk about how you could get more involved in research, please contact cuh.ppi@nhs.net

If your patient or community group is based further afield, we can put you in touch with PPI colleagues who are local to you.

The groups below are listed in alphabetical order. Please be aware these groups cannot provide specific medical advice or referrals to clinicians.

Action for Pulmonary Fibrosis

Action for Pulmonary Fibrosis is a growing community of patients, families, researchers and healthcare professionals striving to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future.

We support patients and families and raise awareness of pulmonary fibrosis through campaigning, fundraising and education. We fund research to improve quality of life for people living with pulmonary fibrosis and to find a cure.

Addenbrooke’s Cancer Patient Partnership Group (CPPG)

The Addenbrooke’s CPPG is a group of patients and carers who work with hospital staff to develop and improve cancer services. The group has 50+ members and is led by a Committee of up to 20 members.

They have recently co-produced this video which emphasises the importance of the patient voice and co-production within Addenbrooke’s Cancer Services.

Age UK Cambridgeshire and Peterborough

Age UK Cambridgeshire and Peterborough works in partnership with Age UK and provides rights-based information which older people and their carers can use with confidence to make informed decisions and choices.

They also offer practical support to older people to help them remain independent in their own homes. As well as campaigning to reduce loneliness, the group aims to reduce social isolation by bringing people together, providing opportunities to meet people and develop friendships.

Alkaptonuria Society

Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition, which can cause significant damage to the bones, cartilage and tissues of those affected.

The AKU Society provides information and support, and its members take an active interest in research, providing a vital patient and carer perspective.

AMNET (The Acoustic Neuroma and Meningioma Network)

AMNET (The Acoustic Neuroma and Meningioma Network) is a support group for people in the East of England who have been diagnosed with skull base tumours such as Acoustic Neuroma (Vestibular Schwannoma) or Meningioma.

They offer support during diagnosis, shared decision-making, management and treatment, understanding that this can be a difficult or unsettling time.

Many of their members have had their treatment or continue under surveillance, and find that meeting with others is an invaluable help to them and their families, in managing symptoms and making adjustments in lifestyle or in the workplace.

Arts and Minds

Arts and Minds uses the arts to help people living with mental health challenges. They aspire to a world where people have the confidence and self-esteem to lead fulfilling lives, and run a portfolio of creative activities programmes to empower people living with mental health challenges to thrive in their communities.

Brainbow

Launched in 2013, Brainbow is a unique partnership between independent charities – Anna’s Hope, Camille’s Appeal, Tom’s Trust and Joshua Tarrant Trust – working with Addenbrooke’s Hospital to fund and provide a pioneering rehabilitation service in the East of England for all children with brain tumours, helping them to reach their full potential.

The service consists of a multi-disciplinary team which includes physiotherapy, speech and language therapy, occupational therapy, clinical psychology, and education.

Cambridge Cancer Help Centre

Cambridge Cancer Help Centre is a small charity providing a calm, friendly drop-in centre away from the hospital. It offers holistic practical, emotional and social support to people with cancer, and their family and friends.

The Centre is conveniently located within Scotsdales Garden Centre at the David Rayner Building, Cambridge CB22 5JT. There is plenty of free parking available, and good bus links with the Citi 7 bus.

Cambridgeshire Deaf Association (CDA)

CDA’s vision is a world with improved health, wellbeing and equality for the local deaf community. They want to achieve this by providing information, encouragement, support and care for deaf people as well as campaigning on the issues that matter to them.

The focus is on developing a stronger deaf community, making changes to public services, providing innovative and first class support services, advocacy and personal care.

Cambridgeshire Hear for You

A new group for patients suffering hearing loss, Cambridgeshire Hear for You is a new way of keeping in touch and exchanging views and ideas, whether it’s about hearing loss, or just your news, ideas and messages about literally anything.

It uses a ‘closed group’ platform on social media to connect people locally who share similar interests and concerns, while providing members with extra safety and security.

Cambridgeshire Hearing Help (CHH)

Founded in 1978 under the name of CAMTAD, CHH’s mission is to reduce the impact of hearing loss on people’s lives across Cambridgeshire.

Its dedicated team of 6 part-time staff and 115+ volunteers provide a range of services and activities to approximately 6,000 people with hearing loss, and their family and friends, each year.

camRARE

camRARE (Cambridge Rare Disease Network) is a charity building a regional community to address the unmet needs of those living with rare conditions, their families and the professionals who work with them. Their vision is for a united regional voice underpinning the development of services and treatments.

The group deliver events and activities that stimulate interest and awareness creating a climate of collaboration and innovation to address unmet therapeutic needs. They support those living with rare conditions in our community to be at the heart of these events and to be part of this wider network.

Cambridgeshire Lupus Group

Part of the national charity LUPUS UK, Cambridgeshire Lupus Group is one of a network of regional support groups throughout the UK.

They provide support, information and contact for people with lupus living in Cambridgeshire and the borders of surrounding counties.

Caring Together

Caring together is a regional charity working to support carers in Cambridgeshire, Peterborough and Norfolk.

They provide information and advice, run services in our local communities and campaign for carers’ rights.

Crohn’s & Colitis UK

The UK’s leading charity for Crohn’s and Colitis, they help inform anyone affected by Crohn’s Disease and Ulcerative Colitis (the two main forms of Inflammatory Bowel Disease), including friends, family, medical professionals and employers.

On the charity’s website you can find out more about IBD conditions, their symptoms and treatment – and how you can get a diagnosis if you think you have Crohn’s or Colitis.

Find out about ways to take part in IBD research

Diabetes UK

Diabetes UK is leading the fight against the UK’s biggest and growing health crisis. They work to prevent Type 2 diabetes, campaign for and support everyone affected by diabetes, and fund research into all forms of diabetes that will one day lead to a cure.

In the East of England Diabetes UK covers Essex, Suffolk, Norfolk, Cambridgeshire, Hertfordshire and Bedfordshire.

Researchers who are interested in involving people from Diabetes UK’s network of volunteer groups, please email research@diabetes.org.uk.

Headway Cambridgeshire

Headway Cambridgeshire provides specialist services to people with an acquired brain injury and other neurological conditions and their families and carers.

The charity works across Cambridgeshire, supporting people through life-changing brain injury. By providing information, hospital liaison, occupational therapy, community enablement and the opportunity to participate in social events, Headway helps people to live as independently as possible and achieve their full potential.

MS Society Cambridge & District

This group is closely involved with MS research at the Cambridge Biomedical Campus and is committed to research for all neurological conditions. A forthcoming merger with the Newmarket group will mean a larger catchment area for researchers.

National Kidney Federation

The objects of the NKF are to promote throughout the UK the best renal medical practice and treatment, the health of people suffering from kidney disease or renal failure, and to support the related needs of those relatives or friends who care for kidney patients.

The NKF is unique because, although there are a large number of kidney charities, the NKF is the only national kidney charity actually run by Kidney Patients for Kidney Patients.

Oliver Zangwill Centre

The Oliver Zangwill Centre provides high quality, evidence-based, neuropsychological assessment and rehabilitation to adults with an acquired brain injury.

The clinical team consists of highly experienced clinical psychologists, speech and language therapists, occupational therapists and therapy assistants, who support clients to understand how their brain injury has disrupted their life course, their sense of identity and their participation in personally meaningful activities.

Parkinson’s UK

Parkinson’s UK is a people-powered movement on the verge of major breakthroughs in Parkinson’s. Together we will find a cure and improve life for everyone affected by Parkinson’s.

It’s important that Parkinson’s research is shaped by people with th condition and the people who love and care for them every step of the way. The Parkinson’s UK Research Involvement team can support you to involve people affected by Parkinson’s in a meaningful and timely way.

To find out more please visit our website or email the Research Involvement team.

Rethink Carer Support – Cambridgeshire and Peterborough

Provides support for the friends and families of people with mental health conditions, running support groups (in person and online) and a phone support service on 07783 267013.

The group is staffed by carers and acts as a voice for carers in the local mental health system. It is part of the national charity Rethink Mental Illness.

Royal Papworth Hospital Pulmonary Fibrosis Support Group

Provides information, support and the opportunity for patients with pulmonary fibrosis to meet others with the same or similar chest diseases.

The group also arranges regular meetings and social activities for patients, relatives and friends.