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DIRECTORY OF MEMBERS 2007   

 

Full Members

See individual organisations for further information about them.      

Action against Medical Accidents
Age Concern England
Association for Improvements in Maternity Services
Breast Cancer Care
British Red Cross

Childhood Eye Cancer Trust

Chiropractic Patients’ Association

CLIC Sargent
Contact a Family
Continence Foundation

Developing Patient Partnerships

Diabetes UK 
Epilepsy Action
Haemophilia Society  
Health Link
Help the Aged
Home from Hospital Care

Leukaemia Care Society
Long-Term Medical Conditions Alliance

Macmillan Cancer Support

Marie Curie Cancer Care
MDF The Bipolar Organisation

MENCAP
Meningitis Trust

Migraine Trust

MIND

Motor Neurone Disease Association

Multiple Sclerosis Society

National Council for Palliative Care
National Endometriosis Society

Patients Association
Princess Royal Trust for Carers

reMEmember (The Chronic Fatigue Society)
Rethink

Sarcoidosis & Interstitial Lung Association
SIGN 
Stroke Association
Which?
Witness: against abuse by health and care workers



Associate Members

British Dental Association
British Medical Association
General Chiropractic Council
General Medical Council

Health Professions Council
London Ambulance Service NHS Trust
National Consumer Council
National Patient Safety Agency

NHS Connecting for Health
Nursing and Midwifery Council
Picker Institute Europe
Royal College of Nursing
Royal Pharmaceutical Society

ACTION AGAINST MEDICAL ACCIDENTS (AvMA)

AvMA works for better patient safety and justice for people who have been affected by medical accidents, including full explanations, remedial action and, where appropriate, compensation. 

Contact details

Peter Walsh
Action against Medical Accidents
44 High Street
Croydon
Surrey CRO 1YB

020 8688  9555 (Administration)
Public helpline: 0845 123 23 52
pa_chiefexec@avma.org.uk
 

www.avma.org.uk

AGE CONCERN ENGLAND

As the National Council on Ageing, Age Concern England brings together national bodies, including charities, professional organisations and representative groups with an interest in ageing and older people.  Our mission is to  promote the well-being of all older people and make later life a fulfilling and enjoyable experience.  Key objectives are to promote positive attitudes towards older people and ageing, to influence and develop public policies that affect older people, to promote effective care for older people and to encourage choice and opportunity.  

Contact details

Philip Hurst
Age Concern England
Astral House
1268 London Road
London SW16 4ER

020 8765  7440   
hurstp@ace.org.uk
 

www.ageconcern.org.uk

ASSOCIATION FOR IMPROVEMENTS IN THE MATERNITY SERVICES

Association for Improvements in the Maternity Services (AIMS) is a pressure group founded in 1960, consisting mainly of parents but includes many in the midwifery and medical professions. AIMS offers information, support and advice about all aspects of maternity care including parents rights, choices available and technological interventions.

Contact details

Beverley A. Beech
Association for Improvements in Maternity Services
5 Ann's Court
Grove Road
Surbiton
Surrey, KT6 4BE

020 8390  9534                
beverley.beech@aims.org.uk

www.aims.org.uk

Help line:  0870 7651433   

 

BREAST CANCER CARE

Breast Cancer Care is a national organisation offering information and support to those affected by breast cancer or other breast health concerns.  Our services are free, confidential and accessible.

Contact details

Anna Wood
Breast Cancer Care
Kiln House
210 New King’s Road
London SW6 4NZ

020 7384  2984              
annaw@breastcancercare.org.uk

www.breastcancercare.org.uk

 

BRITISH RED CROSS

 
The British Red Cross helps people in times of crisis.  We provide a range of high quality services in local communities across the UK every day.  These services offer short term help to those most in need.  All of our services are delivered by skilled and trained volunteers and staff.

Our health and social care services include: home from hospital – assisting people returning home from hospital with practical and emotional support; medical loan service – providing essential equipment, such as wheelchairs; transport and escort service – assisting those who have difficulty making essential journeys; therapeutic care – relieving stress and promoting relaxation through simple massage and skin camouflage – rebuilding confidence by demonstrating the application of cover creams to disguise disfiguring skin conditions.

Contact details:

Liz Urben
British Red Cross
44 Moorfields House
Moorfields
London EC2Y 9AL

020 7877 7286
lurben@redcross.org.uk
www.redcross.org.uk

 

CHILDHOOD EYE CANCER TRUST

The Childhood Eye Cancer Trust is the national charity for children with eye cancer.

We have three aims. 

1. Support.

We employ a full time Family Support Worker. She can provide information and emotional support, and put individuals and families in touch with one another. We produce information leaflets, a newsletter three times a year and hold an annual family day.  

2. Funding Research

     We fund various research projects that will benefit sufferers.

3.  Raising Awareness

We raise awareness of this rare cancer with health professionals and the general public through campaigns and ongoing projects.

Contact details

Libby Halford
The Childhood Eye Cancer Trust
The Royal London Hospital
Whitechapel Road
London E1 1BB

020 7377 5578
libby.halford @chect.org.uk

www.chect.org.uk

 

CHIROPRACTIC PATIENTS ASSOCIATION

 

Key aims are to:

·          Make chiropractic treatment more easily accessible via the NHS

·            Ensure patient we lfare

·         Build awareness of chiropractic services and the benefits of treatment

·            Provide a patient helpline for advice and information

·           Provide informed advice and information to the general public and the medical profession

·           Fund research in chiropractic for the benefit of patients

·           Assist chiropractic educational institutions

Contact details

Hew Helps
Chiropractic Patients' Association
Home Farm
Easton Royal
Pewsey
Wilts SN9 5LZ

01672 810656 
hew.helps@farmline.com
 

www.chiropatients.org.uk

CLIC SARGENT

CLIC Sargent  is a national children's cancer charity providing a wide range of services for children affected by childhood cancer and their families. CLIC Sargent nurses, doctors and play specialists work within the NHS and CLIC Homes from Home provide residential accommodation for families having to live away from home. Financial assistance for families and research grants are also available. 

Contact details

Sarah Talbot-Williams 
CLIC Sargent
Abbey Wood Business Park
Filton
Bristol BS34 7JU

0117 311 2643
sarah-talbot-williams@clicsargent.org.uk 

www.clicsargent.org.uk

CONTACT A FAMILY

Contact a Family provides advice, information and support to parents and families of children with any disability or specific health condition, including rare disorders. 

Contact details

Yvonne McGahren
Contact a Family
209-211 City Road
London EC1V 1JN

020 7608 8700   
Helpline: 0808 808 3555  
Minicom:0808 808 3556      
yvonne.mcgahren@cafamily.org.uk
www.cafamily.org.uk

 

CONTINENCE FOUNDATION

The Continence Foundation is a UK-wide charity concerned with bladder and bowel control problems
in adults - at least 6 million people are affected.

Contact details

Dr. Judith Wardle
Continence Foundation
307 Hatton Square Business Centre
16 Baldwin Gardens
London EC1N 7RJ

020 7404 6875 
judith.wardle@dial.pipex.com
 

www.continence-foundation.org.uk

DEVELOPING PATIENT PARTNERSHIPS

 

Contact details

Kristin McCarthy
Developing Patient Partnerships
Tavistock House
Tavistock Square
London WC1H 9JP

020 7383 6144
kmccarthy@bma.org.uk
www.dpp.org.uk

 

DIABETES UK

Diabetes UK's aims are to help improve the lives of people with diabetes and to work towards a future without diabetes. Diabetes UK provides information and support to patients through our telephone Careline and a wide range of leaflets and magazines. We work with and provide support to health professionals working in diabetes. We invest in research, and campaign to raise awareness of diabetes and to fight for better diabetes services for all.

Contact details

Bridget Turner
Diabetes UK
10 Parkway
London NW1 7AA

020 7424  1111      
policy@diabetes.org.uk

www.diabetes.org.uk
General Enquiries:  info@diabetes.org.uk    (020 7424 1000)
Careline:  careline@diabetes.org.uk 
  (020 7424 1030)

     

EPILEPSY ACTION

  Aims:

  •     To raise awareness among Epilepsy Action’s target audiences about epilepsy and about Epilepsy Action and its work

  •     To educate people about the facts about epilepsy and improve their understanding of the condition

  •     To bring about permanent change for the social and medical benefit of people with epilepsy

  •     To provide advice and information about epilepsy that is relevant to people’s needs and that is accessible in terms of location, availability and cost

  •     To promote and undertake non-laboratory social and medical research into epilepsy

  •     To maximise the resources available to Epilepsy Action, using them as effectively and efficiently as possible

  •     To develop Epilepsy Action’s fundraising activities and income consistent with the values of Epilepsy Action and its immediate and long term financial needs

  •      To engage with the Education Sector to ensure that the condition is fully understood and the needs of people with epilepsy are supported in the education process

  •      To be representative and inclusive of, and accessible to, all people with an interest in epilepsy

  •      To encourage and enable the active involvement of its members and other stakeholders in meeting its aims

Contact details  

 

Monica Cooper
Epilepsy Action
New Anstey House
Gate Way Drive
Yeadon
Leeds LS19 7XY

0113 2108800
mcooper@epilepsy.org.uk
www.epilepsy.org.uk

HAEMOPHILIA SOCIETY

The Haemophilia Society works for the best possible care, treatment and support for people with haemophilia or related bleeding disorders and their families.  It provides information, advice, support and advocacy to affected people and their families and health/social services and other professionals.

Contact details

Ruth Taylor
Haemophilia Society
Petersham House
57a Hatton Garden
London EC1N 8JG 

020 7831 1020    (Administration)  
Helpline number 0800 018 6068  
info@haemophilia.org.uk
 

www.haemophilia.org.uk

 

 HEALTH LINK

Health Link's remit is to facilitate and encourage community self-help on health inequalities and community improvement in health services - promoting public influence in health.

Elizabeth Manero
Health Link
62 Beechwood Road
London E8 3DY

020 7254 1582
d.neal@health-link.org.uk
www.health-link.org.uk

HELP THE AGED

Our vision is of a future where older people are free from the disadvantages of poverty, isolation and neglect, so they can live with dignity as valued, respected and involved members of society.  We aim to secure and uphold the rights of disadvantaged older people in the UK and around the world. Working with them, we will research their needs, campaign for changes in policy, and provide services to alleviate hardship today and prevent deprivation tomorrow.

WE WILL:

  • combat poverty to achieve significant reductions in financial hardship and social exclusion, and mitigate their worst effects.
  • reduce isolation to decrease the number of older people experiencing loneliness and isolation.
     
  • challenge neglect to secure the delivery of consistently accessible, good-quality care, addressing the biggest threats to health and well-being.
  • defeat ageism to win equality and human rights for disadvantaged older people, enabling them to escape from deprivation.
  • prevent future deprivation to reduce those at greatest risk in the future by stimulating prevention as well as cure, through research and other means.

We do this by providing a range of direct services in the UK to help older people live active and independent lives, funding vital research into the illnesses and social context of ageing, and working internationally.

Contact details

Gerry Mahaffey
Help the Aged
207-221 Pentonville Road
London N1 9UZ

020 7239 1886      

 

HOME FROM HOSPITAL CARE

Registered charity working for improved discharge planning and aftercare for patients returning home from health treatment in the UK, so as to maximise their chances of recovery.  It also provides advice, counselling and literature.  Periodic investigations are undertaken to keep abreast of current practice.  A free Welcome Home Service is provided by volunteers in the Birmingham area.  “We draw on lessons learned from this service and elsewhere to comment on national practice and policy."

Contact details

Geraldine Amos
Home from Hospital Care
118 City Road
Edgbaston
Birmingham B16 0NL

0121 434 5494   
geraldineamos.homefromhospitalcare@virgin.net

 

LEUKAEMIA CARE 

Leukaemia Care provides vital care and support to all those whose lives have been affected by leukaemia or an allied blood disorder.  The charity's work extends to the carer and the family as well as the patient themselves. 'One of the charity's greatest strengths is that we remain a family charity and offer a depth of understanding and support based firmly on knowledge and experience'.  The charity receives no government funding and relies entirely on voluntary donations to maintain the level of care and support that is provided on a national basis.  The charity also provides a 24/7 CareLine which is staffed by previous patients and carers on 0800 1696 680.

Contact details

Eve Martin
Leukaemia Care Society
One Birch Court
Blackpole East
Worcester WR3 8SG

01905 755977     
eve.martin@leukaemia.org.uk
 

www.leukaemiacare.org.uk
 

   

LMCA  (LONG-TERM MEDICAL CONDITIONS ALLIANCE) 

 

The umbrella charity working for better lives for people with long-term health conditions. 

Our vision is of a world where people affected by long-term conditions have control over their lives and can live them to the full.

Contact details

David Pink
Chief Executive
LMCA 
202 Hatton Square
16 Baldwin Gardens
London EC1N 7RJ

020 7813 3642 
davidpink@lmca.org.uk
 

www.lmca.org.uk

   

MACMILLAN CANCER SUPPORT

 

Contact details

Duleep Allirajah
Macmillan Cancer Relief
89 Albert Embankment
London SE1 7UQ

 020 7840 7867
Fax 020 7840 7841
Email. dallirajah@macmillan.org.uk

 

MARIE CURIE CANCER CARE

Marie Curie Cancer Care provides high quality nursing, totally free, to give terminally ill people the choice of dying at home supported by their families.

Contact details

Lady Kate Cotton 
Marie Curie Cancer Care
7th Floor
89 Albert Embankment
London SE1 7TP

020 7599 7258   
kate.cotton@mariecurie.org.uk
www.mariecurie.org.uk

 

MDF THE BIPOLAR ORGANISATION 

MDF The Bipolar Organisation works to enable people affected by manic depression to take control of their lives.

Contact details   

Michelle Rowett

MDF The Bipolar Organisation
Castle Works
21 St. George's Road
London SE1 6ES

020 7793  2600   & 08456 340540     
mdf@mdf.org.uk
 

www.mdf.org.uk
 

   

MENCAP  

Mencap is the UK's leading learning disability charity working with people with a learning disability and their families and carers. 

Contact details

Carol Herrity
Royal Mencap Society 
123 Golden Lane
London EC1Y 0RT

Learning Disability Helpline: 0808 808 1111
Helpline@  help@mencap.org.uk
carol.herrity@mencap.org.uk

www.mencap.org.uk

MENINGITIS TRUST

 
The Meningitis Trust offers support for life to people affected by meningitis through a range of services including counselling, financial grants and a 24-hour nurse led Helpline.  The Meningitis Trust raises awareness about the disease and its after effects through a range of activities and through the provision of specialist information materials.  These have been developed for both the general public and health professionals.  

We also fund lifesaving research to develop new vaccines and treatments and understand more about the after effects and their impact on families and communities.

Contact details

Sue Davie

Meningitis Trust
Fern House
Bath Road
Stroud
Gloucestershire GL5 3TJ

01453 769011 
www.meningitis-trust.org

 

MIGRAINE TRUST


The Migraine Trust is a national organisation established to fund research into migraine and to support all those affected by it. This is provided by a telephone helpline, printed information, website, workshops and a regular newsletter. The Trust works with other organisations to raise the profile of migraine and influence policymakers.

Contact details:

Liz Rickarby
The Migraine Trust
55-56 Russell Square
London WC1B 4HP

020 7642 6605
education@migrainetrust.org
www.migrainetrust.org

MIND

Mind is the leading mental health charity in England and Wales, working for a better life for everyone with experience of mental distress.   Mind does this by: 

  •     Advancing the views, needs and ambitions of people with     
       
    experience of mental distress

  •     Promoting inclusion by challenging discrimination

  •     Influencing policy through campaigning and education

  •     Inspiring the development of quality services, which reflect
        expressed need and diversity

  •     Achieving equal civil and legal rights through campaigning and 
        education


The values and principles that underpin Mind's work are:
 

        Autonomy, Equality, Knowledge, Participation and Respect.

Contact details


MIND - The Mental Health Charity
15-19 Broadway
Stratford
London E15 4BQ

020 8215  2282         
 

www.mind.org.uk

   

MND ASSOCIATION

The Motor Neurone Disease (MND) Association is the only national organisation representing people affected by MND. Its aims are: 

  • To enable people with MND to secure the care and support they
     need

  •  To promote research into causes and treatments

  •  To raise awareness and understanding of MND among the public,
     healthcare professionals and decision makers

Contact details

Mark Hill 
MND Association
David Niven House
10-15 Notre Dame Mews
Northampton NN1 2BG

01604 611844         
mark.hill@mndassociation.org

www.mndassociation.org

 

MULTIPLE SCLEROSIS SOCIETY

The MS Society is a national organisation dedicated to supporting everyone whose life is touched by MS.  It provides a range of services including respite care, local support groups, a freephone helpline, information through publications and website, education and training, and specialist MS nurses.  It also supports vital MS research, both biomedical and applied.

Contact details 

Emily Sam
Multiple Sclerosis Society
372 Edgware Road
London NW2 6ND

020 8438 0827 
www.mssociety.org.uk

     

NATIONAL COUNCIL FOR PALLIATIVE CARE

The National Council for Palliative Care (NCPC) is the umbrella organisation for all those who are involved in providing, commissioning and using hospice and palliative care services in England , Wales & Northern Ireland. It promotes the extension and improvement of palliative care services regardless of diagnosis in all health and social care settings and across all sectors to government, national and local policy makers. NCPC runs regular events and publishes a quarterly magazine, a monthly e-mail briefing and regular topical briefing bulletins and publications. Subscribers are supported through an area and country structure providing local meetings, events and ongoing communication with Head Quarters.


Contact details

Erica Young
National Council for Palliative Care
188-194  York Way
London N7 9AS

020 7697 1520
www.ncpc.org.uk

NATIONAL ENDOMETRIOSIS SOCIETY


The National Endometriosis Society is the leading UK charity supporting women with endometriosis, their partners and families. It provides support services, including a helpline, support groups and self management courses as well as information and education.  It also funds medical research and campaigns for higher public awareness of endometriosis, improved services and increased funding.

Contact details

Robert Music
National Endometriosis Society
Suite 50
Westminster Palace Gardens
1-7 Artillery Row
London  SW1P 1RL
 

020 7222 2781
rmusic@endo.org.uk

www.endo.org.uk    

PATIENTS ASSOCIATION

The Patients’ Association seeks to provide information and assistance to patients on its helpline and various publications. It also seeks to ensure that patients are involved in decisions that affect them and their families and are able to contribute as equals in a dialogue with professionals.

Contact details

Katherine Murphy
Patients’ Association
PO Box 935
Harrow,
Middx HA1 3YJ

0208 423  9111           
mailbox@patients-association.com

www.patients-association.com   

 

PRINCESS ROYAL TRUST FOR CARERS (PRTC)

The Princess Royal Trust for Carers (PRTC) works to reach carers and develop services for carers across the UK through its network of Carers Centres. Each Carers Centre works with Carers to provide local services, including information/advice, a listening ear, personal counselling, advocacy, education/training facilitating consultation between carers and statutory authorities, in addition to recreational events for carers.

The Trust provides training and support for Carers Centres, as well as raising funds for development work and schemes such as the educational bursary, carers relief and rural transport schemes.

Contact details

Nicola Skingle
Princess Royal Trust for Carers
142 Minories
London EC3N 1LB

020 7480 7788        
www.carers.org

   

reMEmember (THE CHRONIC FATIGUE SOCIETY)

reMEmber has been set up to campaign for better services for CFS/ME patients. We work locally and regionally.  We run self management courses for sufferers and are developing further information services.  In order to improve understanding of the condition we organise seminars for patients, health care professionals, employers and their Occupational Health staff, social services and other interested organisations ie Rotary Club and the West Sussex Learning Partnership.  We are fund raising in order to develop and research the role of a clinical nurse specialist to attend severely affected patients in their homes.  The Director was a member of the Chief Medical Officer's Working group on CFS/ME. 

Contact details

Janice Kent
reMEmember (The Chronic Fatigue Society)
PO Box 1647 Hassocks
West Sussex BN6 9GQ

01273 831733 
me_cfs@hotmail.com
 

www.remembercfs.org.uk

 

RETHINK

Rethink is the charity for people who experience severe mental illness and for those who care for them. It is both a campaigning membership charity, with a network of mutual support groups around the country, and a large voluntary sector provider in mental health, helping 7000 people each day.  Through all its work, Rethink aims to help people who experience severe mental illness to achieve a meaningful and fulfilling life and to press for their families and friends to obtain the support they need.

Contact details 

Graham Estop
Rethink
28 Castle Street
Kingston-upon-Thames
Surrey KT1 1SS

020 8547 9206

www.rethink.org

 

SIGN CHARITY
(The National Society for Mental Health and Deafness)

Sign is the only charity in the UK whose work is dedicated to the field of mental health and deafness.  It also runs a national health promotion campaign called "reaching deaf minds" for healthy deaf lives, which aims to raise awareness of the emotional needs of deaf people and combat discrimination that deaf people may experience in accessing healthcare services.  They offer training and consultancy to healthcare professionals to make their services more deaf friendly.  

Contact details

Paul Stemman
SIGN
5 Baring Road
Beaconsfield
Bucks HP9 2NB

01494 687600
info@signcharity.org.uk
www.signcharity.org.uk

   

SARCOIDOSIS AND INTERSTITIAL LUNG ASOCIATION

The aims are:

  • Raise public awareness, obtaining recognition from government bodies to then make the claiming of benefits a more automatic process

  • Compile statistical information on Sarcoidosis sufferers and to share this with doctors and research institutions to help further research into finding a cure

  • Provide mutual practical and emotional support, advice and encouragement to fellow sufferers making them feel less alone and isolated with this disease

  • Help promote research, especially in the area of effective treatment and to identify those most at risk

Contact details

Heather Walker
Sarcoidosis & Intestitial Lung Association
c/o The Chest Clinic Office
2nd floor, Admin Office
King's College Hospital
Denmark Hill
London SE5 9RS

020 7237 5912
info@sila.org.uk
www.sila.org.uk 

STROKE ASSOCIATION

The Stroke Association is a national charity, solely concerned with stroke. It provides support to people who have had strokes, their families and carers.  It campaigns, educates and informs to increase knowledge of stroke at all levels of society.  It funds and promotes medical research into stroke.  It runs an education, training and information service, provides publications and welfare grants.

Contact details

Graham Barker
The Stroke Association
Stroke House
240 City Road
London EC1V 2PR

020 7566  1504    
gbarker@stroke.org.uk
 

www.stroke.org.uk
 

 

WHICH?

Which? campaigns for patient-focused healthcare for all consumers, including information and support to enable safe choices.

Contact details

Emma Harrison
Principal Public Affairs Officer
Which?
2 Marylebone Road
London  NW1 4DF

020 7770 7228
emma.harrison@which.co.uk
    

www.which.net/campaigns

 

WITNESS: against abuse by health & care workers   (formerly POPAN)

Witness believes that the 300 calls to its helpline each year represent the tip of the iceberg in relation to the number of cases of abuse by health or care workers there may be in the UK.  The recent Pleming Inquiry into two doctors (Kerr and Haslam) posited that a range of 3-6% of doctors may have had sexual contact with one or more of their current patients.  This equates to 6,500 – 13,000 doctors and as many as 120,000 practitioners across the health and care sector.

Witness is the only charity in the UK working exclusively with people who have been abused by health or social care workers.  Its key service is a confidential Helpline and Support & Advocacy service for people who have been abused. It also provides information and training and carries out research to improve public protection measures.  Its remit spans the whole health and care sector, from crystal healing and counselling to consultant psychiatrists and social care workers and all points in between.

Contact details         

Jonathan Coe
Witness: against abuse by health & care workers )formerly POPAN)

Delta House
175-177 Borough High Street
London SE1 1HR

020 7939 9920
email:
jcoe@witnessagainstabuse.org.uk
Website:
www.witnessagainstabuse.org.uk.

 

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