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User Groups and Charities Across East Midlands and Wider

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User groups and Charities across the East Midlands and wider

User Groups and Charities Across East Midlands and Wider

Advocacy Services – Northamptonshire County Council – 2005
Total Voice’ – Advocacy services across Northamptonshire

Total Voice Northamptonshire

Doddridge Centre
109 St James Road

Tel: 02033 558846


Total Voice is an advocacy service providing independent advocacy for people aged over 18.

They support people who use adult mental health care services in Northamptonshire with issues about mental health and social care.

Akwaaba Ayeh

40 Chandos Street

Leicester LE2 1BL
0116 247 1525

Formally the Mental Health Shop. Provides advocacy to people of African, African-Caribbean and Asian origin with mental health needs. Also provides advice, information and support. Home and hospital visits are available on request. Punjabi, Hindi and Patois spoken, interpreters for other languages can be arranged. Transport available for client support group meetings.
Service for African, African Caribbean & Asian people.

Braunstone Alert

Braunstone Neighbourhood Management Board

Residents Network

Neighbourhood Support Team

45 Wellinger Way


LE3 1RG RETIRED MARCH 2013 – any replacement?

“Braunstone Alert” Magazine

Services for Older Residents

Health & Social Care Centre

Crime & Grime

Bendbow Site

Braunstone Awards


42 Graham Road

SO14 0AW

Tel: +44 (0)23 80227949

British Charities portal provides directory of UK registered charities, charity shops, charity suppliers and charity news. The main aim is to assist people in giving to charity.

Carers Development Project, Mental Health, Health & Social Care Projects

Carers Development, Mental Health, Health & Social Care Projects

The Pavilion

Sportsfield Lane

Huncote Leicestershire LE9 3BN

Tel 0116 272 7669

Mental Health Services Manager Annette Boon


Community Action Partnershp's Mental Health Project offers a variety of social groups, befriending scheme, sporting activity and organic gardening, all aiming to enable recovery by providing the space and skills people need to cope with their difficulties, increase their confidence and self esteem and lead an independent life.


CLASP The Carers Centre

Unit 19, 4th Floor

Matrix House

Constitution Hill



Tel: 0116 2510999


CLASP The Carers Centre is a registered charity which was set up in 1994 to provide a wide range of support services for carers living in Leicester, Leicestershire and Rutland.

Communities in partnership (CiP)

Beaumont Enterprise Centre, Boston Road, Leicester LE4 1HB
Tel: 0116 234 1577 Fax: 0116 235 1844 email:

And Jen Lovegrove (Engagement Manager)

Communities in Partnership aims to improve the lives of the people of Leicestershire, Rutland and Leicester City by encouraging individuals and organisations to work in partnership with each other, and with government, to build stronger, safer and better communities.


Desmond National Office

Ward 5/6

Leicester General Hospital

Leicester, LE5 4PW

Tel: 0116 2585881 

Patient structured education and educator training in Type 2 diabetes

East Midlands Funders’ Forum

By post c/o:-

Social Enterprise East Midlands

Ian Fisher, Administration officer

Contact: Tel: (0115) 871 4760

Fax: (0115) 871 4768

Suite 28 Minerva House

Spaniel Row

Provides opportunities for funders to meet together to share ideas, discuss and learn about funding policy and disseminate information. Provides support and advice for those seeking funding and a range of training programmes and resources on securing funding. EMFF is hosted within the Funding Access Section of Regeneration East Midlands


Sarah Greening,

Health Information Co-ordinator,
Library Services Development Unit,
NHS West Midlands Workforce Deanery
St. Chad's Court,
213 Hagley Road,
B16 9RG

Telephone: 0121 695 2227

Electronic Quality Information for Patients (National support groups & W.Mids)

The database lists 3500 groups. Each entry includes the support group's address, telephone number, helpline, email, website (if available), services and the date it was last checked. Updated annually.

Search by location - you can choose from either searching the whole of the 'UK' for national support groups; the 'West Midlands' for groups covering the whole region; or choose an individual county or Primary Care Trust area for more local groups (West Midlands counties only).
Search by health topic - there is a drop down list of health topics to choose from.

Search by topic AND location - For example, you could look for Hearing disorders contacts in Worcestershire.


Unit 15, 3rd Floor,
Matrix House
7 Constitution Hill
Leicester LE1 1PL
0116 251 3351

Works for and with people with disabilities, including learning difficulties and people with physical and sensory impairments and/or mental health difficulties. Offers a wide range of support to people involved in assessments, reviews and complaints proceedings. Provides an individual as well as group advocacy service.


Community Information Website, covering Leicestershire, Leicester and Rutland

Database holding details of 5,000 clubs, societies, organisation and self help groups based in the region.

Kettering Voluntary Network

Unit 3 The Business Exchange, Rockingham Rd,


NN16 8JX

Tel 01536 526422

Kettering Voluntary Network (KVN) supports voluntary and community groups throughout the Borough of Kettering by providing
· A volunteer brokerage service
· Advice and signposting for new and existing groups
· Assistance for groups in finding funding sources and making grant applications
· A quarterly newsletter
· Regular networking opportunities for the Kettering Voluntary Forum
· Representation for local groups on local and countywide partnerships.
· Workshops on topics such as supporting volunteers, marketing your organisation and writing funding bids.

LAMP Leicestershire Action for Mental Health Project

65 Regent Road

Leicester LE1 6YF
0116 255 6286

Gateway to information on mental health throughout Leicester, Leicestershire and Rutland. Works primarily with people experiencing mental distress and with carers. Closely involved in consultation and development of local services. Its advocacy services empower people to make informed choices, to express their views, and to access rights and entitlements. Information services provide leaflets, signposting and advice to its target group, mental health professionals and the general public. Manages a mental health web site

Leicester Centre for Ethnic Health Research

Leicester Centre for Ethnic Health Research Coordinator


Tel 0116 295 4140

92 Regent Road

Third Floor, Enkalon House, Leicester


Launched in 2006 to aid the delivery of equitable health care in the UK through investigation of disease patterns in ethnic minority population

Consumer Panel

To promote the LCEHR

To become involved in research projects either as individuals or as a panel

To facilitate access of researchers to ethnic minority communities and organisations

To assist in the recruitment of participants to research studies

To identify the areas of research that are important to the local ethnic minority communities

To assist in the dissemination of research findings in the local communities

Leicester City and Leicestershire County Carers Project

1st Floor Tornos House, Garden Road
Whitwick Business Park
LE67 45Q

01530 836289

This project in Leicester City and Leicestershire County supports carers of those with serious mental illness. Primarily we offer information, one-to-one support and develop new groups for carers in the city. Advocacy and signposting to local services as well as national networks. CETP (Carers Education and Training Programme) courses have been provided. Carers also have access to information about Rethink events.

The Leicestershire Diabetes Focus Group

Lead: Michelle Izzard – Diabetes Research Network Support Manager, Tel: 0116 2587250,

Reviews of study literature, some members attend national PPI training events and conferences, developed review sheets for grant applications

Leicester, Leicestershire & Rutland Focusline

Churchill House
14 Heathcote Street

0800 027 2127 (Helpline)

The Churchill House project includes a telephone helpline service known as Focusline, which offers confidential support, information and emotional support to the Leicester, Leicestershire and Rutland areas. This service is available to any adult who has a mental health problem, carers and professional agencies.

Leicester Link

Jon Davis

Community Engagement Worker

Freepost RRHL-BYCU-EGSU, Threadneedle House, 27 Copdale Road, Leicester


0116 273 6506


Laura Marano
Community Engagement Worker Leicester City LINk Team

Business Box, 3 Oswin Road, Leicester, LE3 1HR

Tel: 0116 279 5075
Mobile: 07525 237 742

Network of local people, organisation and groups who want to strengthen the quality of local health and social care services.
Leicester LINk Participation Forum

“Stronger Voice, Better Care” booklet

Mission Statement

Distribution of Contact Details LINk Consent Form

Leicestershire Partnership

Leicestershire Partnership NHS Trust

George Hine House

Gipsy Lane



Tel 0116 225 6000


Leicestershire Partnership NHS Trust offers a wide range of services and support including

Child and adolescent mental health services, mental health services for adults and older people, learning disability services, specialist services, e.g. drug and alcohol services, eating disorder services, psychotherapy services, patient and liaison service (PALS), advocacy services and support groups.

Mental Health Research Network

MHRN East Midlands Hub plus South Yorkshire 

Hub manager: Anne Priddey
telephone: 0115 823 1302

MHRN East Midlands Hub plus South Yorkshire

Institute of Mental Health
Sir Colin Campbell Building
University of Nottingham Innovation Park
Triumph Road
Nottingham NG7 2TU 

SURGE (Service User Research Group for England) supports mental health service users, clinicians and academics as they work together on mental health research.
SURGE plays an important part in making sure research across the MHRN is valuable for and makes sense to service users. SURGE support service user input into the MHRN through service user involvement in local hub committees, research project teams and at a national level.

National association of LINks members (NALM)

National Organisations

Patient Support

To learn more about LINks go to the Department of Health website
The ‘host’ agency for the LINk in Leicester:

Unit 55, The Business Box,

2 Oswin Road,



James Hellard

LINks Administrator

Tel: 0116 279 5075


For general enquiries:

Registered Address: 1 Beech Avenue, Sherwood Rise, Nottingham, NG7 7LJ

Details of 1910 UK patient support organisations, self help groups, health and disease information providers, etc. Each entry is cross referenced and details are checked annually. Browse by A-Z, by subject category, or search using the search box above. (Regularly updated)

A free directory that lists self help groups, support groups and charities in the UK.

Patient and public involvement

The PPI Forums closed at the end of March 2008 and were replaced by Local Involvement Networks (LINks).

A stronger local voice: A framework for creating a stronger local voice in the development of health and social care services.

The LINk will be launched Sept/Oct 08 and should eventually have a website in the meanwhile contact via phone.

National Youth Agency

National Youth Agency, Eastgate House, 19-23 Humberstone Road, Leicester, LE5 3GJ

Tel 0116 242 7350



“Involving Children and Young People – An Introduction”

NHS Leicester City

NHS Leicestershire County and Rutland

Deb Wall, Directorate of Public Health & Improvement, NHS Leicester City

Publication “Get Involved in Research” A Brief guide for patients, carers and the public who want to find out more about health based research and how to become involved in research projects

NHS National Institute for Health and Clinical Excellence

National Institute for Health and Clinical Excellence

MidCity Place

71 High Holborn



“A Guide for Patients and Carers” Contributing to a NICE clinical guideline”

  • How Patient and Carer organisations can contribute – the stakeholder process

  • How individual patients and carers can contribute

  • What happens when NICE guidelines are published?

NHS National Institute for Health Research

NIHR Local Research Networks within East Midlands SHA

South East Midlands DRN (Part of the NIHR Diabetes Research Network)

Network Leads Professor Melanie Davies and Professor Kamlesh Khunti

Network Manager: Susan Enright

Host Organisation University Hospitals of Leicester NHS Trust

Tel 0116 204 7818

Address Department of Diabetes Research, Victoria Building, Level 0 University Hospitals of Leicester, Leicester Royal Infirmary, Leicester, LE1 5WW



The NIHR Clinical Research Network (NIHR CRN) is managed by the NIHR Clinical Research Network Coordinating Centre (NIHR CRN CC) and is one of the four Networks in the UK that comprise the UK Clinical Research Network. The Networks support and deliver high quality clinical research studies.


Leicestershire, Northamptonshire and Rutland

Partner Organisation in CLAHRC

University Hospitals of Leicester et al

Collaboration for Leadership in Applied Health Research & Care
“Working Together to conduct high quality research to improve the health of the population of Leicestershire, Northamptonshire and Rutland”

Northampton Charities and Voluntary Organisations

Northampton Volunteering Centre
15 St. Giles St

Tel: 01604 637522

Northampton Volunteering Centre is an independent, registered charitable company, established in 1990.   Aims to provide highly effective infrastructure support and services for voluntary sector organisations in Northampton and surrounds.

Northamptonshire County Council Children’s and Young People’s Service

Northamptonshire County Council, Children and Young People’s Service, Early Years and Childcare Team

PO Box 216, John Dryden House, 8-10 The Lakes, Northampton, NN4 7DD.


Tel: 01604 237935

This on-line directory provides information on a range of services and activities for children and young people aged 0-20 years across Northamptonshire.

NYA Hear by Right

Standards for the active involvement of children and young people

Eastgate House, 19-23 Humberstone Road, Leicester, LE5 3GJ

Tel 0116 242 7350

Hear by Right booklet and CD Rom

or email

Booklet “Hear by Right” Children and young people’s involvement is a visible commitment that is properly resourced

Children and young people’s involvement is value

Children and young people have equal opportunity to get involved

Policies and standards for the participation of children and young people are in place, evaluated and improved.

Patient Advice and Liaison Service (PALS)

Patient Advice & Liaison Service Leicestershire Partnership Nhs Trust Ground Floor Bradgate Mental Health Unit

Free and confidential service that helps patients. PALS can help answer questions about hospital experiences and offer advice and support for family carers and friends.

Patient Concern

Patient Concern,
PO Box 23732,
SW5 9FY.

Patient Concern is an organisation committed to promoting choice and empowerment for all health service users. The core principle is complete consumer independence. To make sure that there are no conflicts of interest, Patient Concern has special advisers by invitation and supporters who contribute their time, expertise and experience free of charge. This facilitates a totally patient-oriented approach.
Operates as a network. Contributors include patients, their advocates, carers, lawyers, patient representatives, journalists, ethicists and human rights activists.

Patient Information Forum (PIF)

Local PiF representative:

Greta Smalley Communications Manager - Websites

University Hospitals of Leicester NHS Trust
Communications Office
Gwendolen House
Gwendolen Road
Leicester LE5 4QF
Tel: 0116 258 8722

To act as an independent forum for the sharing of good practice amongst those involved in the development, production and dissemination of high-quality consumer health information.

The East Midlands PiF region covers the NHS East Midlands area.

The People’s Forum

The People’s Forum,

Open Assembly@Genesis and

De Montfort University
Unit 26, Vulcan House
Vulcan Road
Leicester LE5 3EF
0116 262 7952

Service User experience of Mental Health Provision in Leicester and Leicestershire and Rutland

Research Project designed, delivered and evaluated by Service Users and Carers

Dec 2008

An independent service user organisation representing Leicestershire County and Rutland, ensuring that the service users' voice is heard. Aims to effect real change in mental health service provision for the benefit of the service user through involvement with the NHS Trust and NIMHE East Midlands. Members sit on numerous statutory service committees involved in planning, service redesign and evaluation. Works towards positive promotion of mental health issues. Self referral

People in Research

Philippa Yeeles

UK Clinical Research Collaboration

20 Park Crescent


T: 020 7670 5153

F: 020 7637 6067

Wessex House
Upper Market Street
SO50 9FD

Telephone: 02380 651088

Textphone: 02380 626239

Fax: 02380 652 885


Aimed at members of the public, People in Research is a UK Clinical Research Collaboration project that has been led by one of its Partner organisations, INVOLVE. The site includes links to the latest research involvement opportunities for the public and a facility for researchers to advertise their research for potential involvement by the public.

Self Help UK

Self Help UK is a free service provided by Intuition Communication Ltd, specialists in health care publishing on the Internet. Consists of a searchable database of over 1,000 self help organisations, patient support groups and charities across the UK that provide support, guidance and advice to patients, carers and their relatives, covering medical conditions, diseases and treatments.
The database can be searched by category or key word, or viewed in a directory format, in which the groups and organisations are grouped by type e.g. Addiction, Aids and HIV, Allergy and so on.


England's Healthcare-Associated Infection (HCAI) Service Users Research Forum (SURF)

Andrea Whitfield (on maternity leave Feb 2013, contact Jessica Brown on )

SURF Coordinator

HCAI Research Network

Thames Valley University

Paragon House

Boston Manor Road

Brentford, Middlesex, TW8 9GA

Tel: 020 8209 4361

Mobile: 07779 124 715

e-mail: (see above for contact)


The UK Advocacy Network (UKAN)

Volserve House
14 - 18 West Bar Green,
S1 2DA.

For the Midlands:

Aylesbury Vale Advocates
Pembroke Court
28 Cambridge Street
Bucks HP20 1RS

T/F: 01296 432313

UKAN, the user controlled national federation of advocacy projects, patients' councils, user forums and self-help and support groups working in the field of mental health.

Midlands; Provides advocacy support to adults (18 - 65) who have communication difficulties, most commonly either mental health problems or a learning disability.  Funded to help those living in the community in the Aylesbury Vale area.  Employs four part-time advocacy coordinators and a team of about 40 volunteers.  Has experience of running User-Focused monitoring projects and has recently been given a contract to run the IMCA service in local area in conjunction with Age Concern.

University of Northampton Service User and Carer Involvement Group

Chair Linda Lilley

Senior Lecturer

School of health

University of Northampton

Tel 01604  892868

Curriculum development in modules run by the School of Health, reviewing research proposals and getting involved in research design

Voluntary Action Leicester

9 Newarke Street

Leicester LE1 5SN

Tel 0116 257 5038

Helpline: 0116 257 5050
Voluntary Action Blaby

300 members drawn from Leicester’s voluntary sector

Work with volunteers

Voluntary Action Rutland

The Rutland Volunteer Centre
Barley Thorpe Rd,
LE15 6QH
Tel: 01572 722622

Voluntary Action Rutland (VAR) is a one stop shop for volunteers and organisations based at the Rutland Volunteer Centre in Oakham. VAR combines the services of a CVS (Council for Voluntary Service) and a Volunteer Bureau (VB). VAR supports and promotes local voluntary action by providing advice, information and training. Offers a wide range of services, however main focus is services to vulnerable people.

Self help groups (from )



International Child Abduction Centre

PO Box 7124, Leicester, LE1 7XX

Advice Line: 0116 2556 234.

Tel: 0116 2555 345


The leading UK charity specialising in international parental child abduction.

Reunite undertakes research into issues of concern to those who use reunite´s services and also areas of research which will make a useful contribution to the debate surrounding the manner in which abduction matters are dealt with.  


Abuse Survivors

22 Revenue Chambers

St Peters Street

Telephone: Helpline and General Enquiries: 0844 357 4567

Email:mail@bpdworld.orgThis e-mail address is being protected from spambots. You need JavaScript enabled to view it

Online support for survivors of abuse. Lists statistical incidence of different types of abuse. Also have work/interest in Depression, BPD, OCDEating Disorders, Schizophrenia, Self Harm, Dissociation.

Action on Elder Abuse

PO Box 60001
SW16 9BY

020 8835 9280 

020 8696 9328

Information and online resources. NAPAC The National Association for
People Abused in Childhood

Providing support and information for people abused in childhood.

Voice Uk

Rooms 100-106 Kelvin House

RTC Business Centre

London Rd


DE24 8UP

Tel: 01332 291042 begin_of_the_skype_highlighting              01332 291042      end_of_the_skype_highlighting

Fax: 01332 207567


A national charity supporting people with learning disabilities and other vulnerable people who have experienced crime or abuse. We also support their families, carers and professional workers.

Acoustic Neuroma

BANA British Acoustic Neuroma Association

The British Acoustic Neuroma Association

Oak House B, Ransom Wood Business Park
Southwell Road West
NG21 0HJ

tel: 01623 632143

fax: 01623 635313

There is an East Midlands support group, details of which are available if you become a member.

In addition to the public areas of the website, there is also a Members-only section accessible right now by all BANA members through the Member's Login. The Members' section will give you access to:

  • Members' Forum

  • BANA’s Treatment Centre Survey

  • Articles about treatment issues

  • Past articles from Headline News, our in-house magazine

  • Regional contact details


Chairman - Alison Frank 01953 860692 begin_of_the_skype_highlighting  

The support group for Acoustic Neuroma or Meningioma patients at Addenbrookes Hospital Cambridge. The Acoustic and Meningioma Network AMNET is a network of former patients, present patients, the clinical staff at Addenbrookes and other interested parties.

Addison's Disease Self Help Group

Deana Kenward (Editor)


PO Box 1083



United Kingdom

Online contact form only

Additives Survivors' Network

Geoff Brewer National Co-ordinator
Additives Survivors' Network (UK)
63 Downlands Road

UK Adhesions Society UKAS

Arden House

The Grange

Tel: 07799526705


Objectives are to provide information on Adhesions and Adhesion related disorders (ARD) its treatment and prevention, for members and to offer support for those suffering from this debilitating disorder.

ALD Life Adrenoleukodystrophy/Adrenomyeloneuropathy

PO BOX 43642


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