CARERS | |
Carers UK
Tel: 020 7378 4999
Advice Line: 0808 808 7777
Web: www.carersuk.org | A membership organisation that campaigns on carer rights and offers training to professionals |
NHS Carers Direct
Tel: 0808 802 0202
Web: www.nhs.uk/Carersdirect | Free confidential information and advice for carers. Lines are open 8am to 9pm Monday to Friday, 11am to 4pm at weekends. Calls are free from UK landlines. |
The Princess Royal Trust for Carers
Tel: 0844 800 4361
Web: www.carers.org
email: info@carers.org | This is a support organisation with nationwide Carers Centres offering support, advice, information & services |
CHILDREN | |
British Society for Paediatric Endocrinology & Diabetes
Web: www.bsped.org.uk | BSPED provides information on gland and growth disorders, including booklets |
Child Growth Foundation
Tel: 020 8995 0257
Web: www.childgrowthfoundation.org
email: info@childgrowthfoundation.org | Support, research funding, public education and growth monitoring. Online discussion forums |
Contact a Family
Tel: 020 7608 8700
Helpline: 0808 808 3555
www.cafamily.org.uk
www.makingcontact.org
(web-based family linking service)
email: helpline@cafamily.org.uk | Contact a Family offers support and services to families including a helpline, nationwide contacts, information for professionals, developmental advice to support groups, informational materials and campaigning |
Education and Resources for Improving Childhood Continence (ERIC)
(Nightime bedwetting and soiling)
Helpline: 0845 370 8008
Web: www.eric.org.uk | Information, support, online forums for all ages, professional information, product sales, literature, newsletter, research, practical advice and a helpline |
The Histiocytosis Research Trust
Tel: 07850 740241
PO Box 435, Leeds LS17 1GE
Web: www.hrtrust.org
email: Shelley.ross@hrtrust.org | Official support network (estab. 1991) for patients suffering from Langerhans Cell Histiocytosis (LCH) & Haemophgocytic Lymphohistiocytosis (HLH) |
Histiocytosis UK
Langerhans Cell Histiocytosis (LCH)
Tel: 07527 166 185
Web: www.histiocytosisuk.net
email: info@histiouk.net | LCH is a disease characterised by an abnormal production of histiocytes (white blood cells that are part of the immune system). Many children with LCH also have Diabetes Insipidus. Histiocytosis UK is a charity run by volunteers. |
Magic Foundation
(Major Aspects of Growth In Children)
Web: www.magicfoundation.org | USA Support organisation for children with growth disorders |
Metabolic Diseases in Children (CLIMB)
Tel: 0800 652 3181
Web: www.climb.org.uk email: info.svcs@climb.org.uk | CLIMB (Children Living with Inherited Metabolic Diseases) funds research, provides information, support and advice and supports families with grants and by educating professionals |
Newlife Foundation for Disabled Children
Freephone Nurse Tel No: 0800 902 0095
Newlife Centre, Hemlock Way, Cannock, Staffordshire, WS11 7GF
Web: www.newlifecharity.co.uk | Newlife Foundation cares for all disabled and terminally ill children and is led by professional nurses. Services are manned by qualified and experienced nurses and they also facilitate an Equipment Grants Service. For more information, see entry in Carers Section. |
Young Minds Trust
Tel: 020 7336 8445
Web: www.youngminds.org.uk
Parent's Helpline: 0800 018 2138 | Services to protect young people's mental health including a helpline, patient information, campaigning & many publications |
CONDITION-SPECIFIC INFORMATION | |
Addison's Disease Self Help Group
Web: www.addisons.org.uk | ADSHG offers extensive information, newsletters and campaigning |
Androgen Insensitivity Syndrome Support
Web: www.aissg.org | Support groups, online support, information, campaigning, newsletters, links to other organisations in different countries, information in different languages |
Anorchidism Support Group
Tel: 01708 372 597
Web: http://freespace.virgin.net/asg.uk | Telephone advice and support, newsletter, linking members together |
Brain Tumour Action
Tel: 0131 466 3116
Web: www.braintumouraction.org.uk | Self-help news and discussion group, online forum, support groups, befrienders |
Cancer Backup / Macmillian
Helpline: 0808 800 1234
Web: http://www.macmillan.org.uk | Cancer BACUP offers practical advice, nurse helplines and other information |
Congenital Adrenal Hyperplasia
Tel: 01525 717536
Web: www.livingwithcah.com
(part of CLIMB - see: Children's section) | CAH has support groups, conferences, newsletters, books, leaflets and information |
Cushing's (ACTH)
Tel: 01628 670 389
Web: www.acth.co.uk | Cushing's ACTH has friendly and informative leaflets and a newsletter |
Diabetes UK
Tel: 020 7424 1000
Careline: 0845 120 2960
Web: www.diabetes.org.uk
email: info@diabetes.org.uk | Diabetes UK works for people with diabetes, funding research, campaigning and helping people live with the condition |
Familial Isolated Pituitary Adenoma (FIPA)
Web: www.fipapatients.org
email: info@fipapatients.org | A small number of patients with pituitary adenomas have family members with similar disease. Some of these patients belong to FIPA families. This website will be a valuable resource for FIPA patients, their families and the health care professionals who care for them. |
Infertility Network UK
Tel: 0800 008 7464
Web: www.infertilitynetworkuk.com | Membership organisation with an advice line, regional network, helpline, local groups, medical advisors, leaflets, factsheets & product sales |
Irritable Bowel Syndrome (IBS)
Helpline: 0114 272 3253
Web: www.theguttrust.org
email: info@theguttrust.org | All helpline calls answered by specialist nurses, advice, information and support |
Kallmann's Syndrome (HYPOHH)
Web: www.kallmanns.org | Membership organisation with an online forum and newsletter |
Klinefelter's Syndrome
Web: www.klinefelter.org.uk
email: ask@klinefelter.org.uk | Membership organisation which has a newsletter and works to create awareness |
Menopause
(Amarant Trust)
Helpline: 01293 413 000 (staffed by nurses)
Web: www.amarantmenopausetrust.org.uk | Menopause & HRT helpline, information, GP Visit Checklists, list of UK clinics, leaflets (must be purchased) and information on alternative therapies |
Menopause - Premature (Early Menopause) The Daisy Network Premature Menopause Support Group
Web: www.daisynetwork.org.uk
email: daisy@daisynetwork.org.uk | The Daisy network is a membership organisation with networkers, tele-counselling, factsheets, online forum, newsletter and books available to purchase |
Multiple Endocrine Neoplasia (MEN) (Association for)
Tel: 01423 780594
Web: www.amend.org.uk
email: info@amend.org.uk | AMEND is a membership organisation with newsletters, telephone buddies, publications |
National Osteoporosis Society
Helpline: 0845 450 0230 (staffed by nurses)
Web: www.nos.org.uk
email: nurses@nos.org.uk
or
info@nos.org.uk | NOS is a membership organisation, awareness, prevention, diagnosis, treatment, helpline, support groups & information |
Pre-menstrual Syndrome (National Association for)
Tel: 0870 777 2178
Web: www.pms.org.uk | Online forum, newsletter, online information, membership, guidelines |
Polycystic Ovary Syndrome (PCOS)
Web: http://www.verity-pcos.org.uk | Verity has discussion boards, local groups, online information, factsheets, membership, newsletter & conferences |
Restricted Growth Association
Office & Help line: 01733 759458
Web: www.restrictedgrowth.co.uk
email: office@restrictedgrowth.co.uk | Has a newsletter, mutual support and encouragement, self-help, advisory booklets, membership, medical advice, welfare, counselling & works to create awareness |
Septo Optic Dysplasia and Optic Nerve Hypoplasia
Web: www.focusfamilies.org | For Parents, Carers, Families and professionals of children with Septo Optic Dysplasia or Optic Nerve Hypoplasia UK Division of FOCUS (For Our Children's Unique Sight) |
Sexual Dysfunction Association
Helpline: 0870 7743 571
Web: http://www.sda.uk.net
email: info@sda.uk.net | SDA is an awareness, education, support membership organisation with newsletters and medical information |
Turner's Syndrome (The Turner's Syndrome Support Society)
Office: 0141 952 8006
Help line: 0845 230 7520
Web: www.tss.org.uk | TSS offers membership, newsletter, publications (available for purchase), Lifelong Guidance and Support Book |
Thyroid (British Thyroid Foundation)
Tel: 01423 709707
Web: www.bft-thyroid.org | Support, information, regional support groups, research funding and books available for purchase |
Thyroid Eye Disease (TED Charitable Trust)
Help Line: 0844 800 8133
Web: www.tedct.co.uk
email: ted@tedct.co.uk | Provides information, care & support to those affected by thyroid eye disease |
Vitiligo Society
Tel: 0800 018 2631
Web: www.vitiligosociety.org.uk | This is a membership organisation with newsletters, research funding, research participation opportunities and works to create awareness |
SYMPTOM -SPECIFIC INFORMATION | |
"ASSIST" Trauma Care
(Post-traumatic Stress Disorder)
Tel: 01788 560 800
Web: www.assisttraumacare.org.uk
email assist@traumatic-stress.freeserve.co.uk | Experienced therapists trained to work with post traumatic stress disorder (PTSD) and the after-effects of trauma |
Changing Faces
Tel: 0845 4500 275
Web: www.changingfaces.org.uk
email: info@changingfaces.org.uk | Changing Faces supports and represents people who have disfigurement, services for children |
Hairline International
Web: www.hairlineinternational.com | Membership organisation with newsletters, information on treatment and cosmetic options & support for hair loss |
The Migraine Trust
Tel: 020 7462 6601
Web: www.migrainetrust.org
email: info@migrainetrust.org | The UK's leading medical research and patient support charity for the condition |
National Federation of the Blind
Tel: 01924 291 313
Web: www.nfbuk.org
email: nfbuk@nfbuk.org |
Primarily a campaigning organisation
|
Obesity (Association for the Study of Obesity)
Web: www.aso.org.uk | Membership (with referral only), campaigning, study, regional groups, awareness & dissemination of information |
Partially Sighted Society
Tel: 0844 477 4966
Web: www.partsight.org.uk
email: info@partsight.org.uk | Provision of information, advice & useful equipment to people with a visual impairment |
Relate
Appointment booking line: 0300 100 1234
Web: www.relate.org.uk | Relate offers advice, relationship counselling, sex therapy, mediation consultations & face-to-face support |
Royal National Institute for the Blind (RNIB)
Helpline: 0303 123 9999
Web: www.rnib.org.uk
email: helpline@rnib.org.uk | Specialist advice, support groups, information on eye conditions, making the most of the rest of your sight, registering as blind/partially sighted, benefits, rights and living with sight loss |
SeeAbility
Tel: 01372 755 000
Web: www.seeability.org
email: enquiries@seeability.org | Support for blind & partially-sighted adults to achieve their potential. Services in Surrey, East Sussex, Somerset, Hampshire and Devon only |
Stress / Anxiety and Depression
Helpline: 01622 717 656 (unchecked) |
|
Tall Persons Club
Tel: 07000 825512
Web: www.tallclub.co.uk | A membership organisation with practical, medical, psychological and social impact information as well as a chat room, articles and services for young people and teenagers |
PATIENT SUPPORT | |
Counselling Directory
Tel: 0844 8030 240
(09.00-17.00 Mon-Fri)
Web: www.counselling-directory.org.uk | Free, confidential UK-wide counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs. The site contains sections on emotional disorders. Every counsellor has sent a copy of their qualifications and insurance cover to us, or is registered with a professional body online. |
Expert Patients Programme (CIC)
Freephone: 0800 988 5550
Web: www.expertpatients.co.uk
email: get.info@eppcic.co.uk | EPP runs FREE courses with the main aim being to improve the quality of life for people living with long-term health conditions |
Patients Association
Helpline: 0845 608 4455
Web: www.patients-association.com
email: helpline@patients-association.com | National healthcare charity - helpline offers advice & support for patients who have concerns or questions about non-medical elements of the health care system, such as how to access their medical records, and acts as a signposting service to ensure that they are put in contact with the groups that can help them the most. |
Samaritans
Tel: 08457 90 90 90
Web: www.samaritans.org | 24-hour confidential, non-judgemental emotional support for people who are experiencing feelings of distress or despair, including those which could lead to suicide |
Turn2us
Tel: 0808 802 2000
Web: www.turn2us.org.uk | Independent charity providing info about benefits and grants. Web site has a useful benefits calculator |
UK Self Help
Web: www.ukselfhelp.info | Exhaustive list of support and information organisations |
GENERAL | |
RADAR Royal Association for Disability and Rehabilitation
Tel: 020 7250 3222
Web: www.radar.org.uk
email: radar@radar.org.uk | National key scheme offering access to disabled toilets |
| INSURANCE | |
Lansdowne Woodward Financial Services Ltd.
Tel: 01202 874 989
Web: www.lansdowne-woodward.co.uk
email: mailto:mail@lansdowne-woodward.co.uk | Life, pension, investment. Refer to John Kane or Rob Bethel |
Tyser Financial Planning
Tel: 0207 397 4888 or 01286 284 361
Web: www.tysers.com
email: info@tyser.co.uk | Insurance and risk management solutions |
| MEDICATION MANAGEMENT PRODUCTS | |
Betterlife Healthcare Ltd
Web: www.betterlifehealthcare.com | UK mail order & internet distributor supplying a range of medication management products |
Frio Wallet
Tel: 01437 741700
Web: www.friouk.com
email: info@friouk.com | Range of travel wallets that keep medications cool |
MedicAlarm Ltd
Web: http://medicalarm.co.uk | A range of pill boxes, reminders, dispensers, cutters and crushers for anyone who needs to take prescribed daily medication at regular intervals in the proper dose |
Tabtime Ltd
Web: www.tabtime.com | Daily/weekly electronic pill/medication timers and reminders, pill cutters, and crushers. Pill timer products have variable audio reminders that can alert up to 8 times per day - some also have a visual alert for the hard of hearing |
NHS | |
NHS Direct
Tel: 0845 4647
Web: www.nhsdirect.nhs.uk | 24-hour support for any health concerns |
NHS Carers Direct
Tel: 0808 802 0202
Web: www.nhs.uk/Carersdirect | Free confidential information and advice for carers. Lines are open 8am to 9pm Monday to Friday, 11am to 4pm at weekends. Calls are free from UK landlines. |
Patient Advocacy Liaison Service (PALS)
Web: www.pals.nhs.uk OR contact your local Primary Care Trust | PALS has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible |
| PERSONAL MEDICAL IDENTIFICATION SYSTEMS | |
ItsMyMedication
Web: www.itsmymedication.com | System for keeping a secure on-line record of your medication & any other info relevant to an emergency situation. Credit card "Emergency Details" alert photo card. Alert jewellery also available. |
MedicAlert
Freephone 0800 581420
Web: www.medicalert.org.uk | The only Registered Charity providing life-saving ID jewellery and a 24-hour emergency line. Large range of pendants, bracelets, necklaces, etc. |
Medi-Tag
Tel: 0121 212 3636
Web: www.hoopers.org/meditag.asp
email: info@medi-tag.co.uk | Pendants, bracelets and watches |
Message in a Bottle
(Emergency medical info stored in a special marked 'bottle' kept in your refrigerator)
Web: www.lions105d.org.uk/miab | Available from Lions Club, local chemists, GPs surgeries, Age Concern, Council Offices, Police Stations and often from Neighbourhood Watch schemes and Housing Associations |
Press Don't Panic
Tel: 01721 730 311
Web: www.pressdontpanic.com | Audio button allows information to be recorded and stored by the wearer in any language which can be played back, when required, by the wearer or by those offering assistance. |
SOS Talisman
Tel: 020 8554 5579
Web: www.sostalisman.co.uk | Emergency medical information bracelets and pendants |
Universal Medical ID UK
Web: www.universalmedicalid.co.uk | Personalised medical ID jewellery |
UTAG
Web: www.utagice.com | A range of emergency contact items incorporating USB data storage |
Yellow Cross
Web: www.yellowcross.co.uk/catalog | Medical bags, containers, personal ID, translation cards |
TRAVEL INFORMATION & INSURANCE | |
Able2Travel
Tel: 0845 839 9345
Web: www.able2travel.com | Travel insurance for people with existing medical conditions |
ACE Travel Insurance
Freephone 0800 028 2396
Web: www.aceinsure.com
email: ACE.TravelUK@ace-ins.com | Travel Insurance
|
Citybond Suretravel
Tel: 0845 618 0345
Web: www.citybond.co.uk
email: info@citybond.co.uk | Travel Insurance (declare pre-existing condition)
|
Direct Travel Insurance
Tel: 0845 605 2700
Web: www.direct-travel.co.uk/pre-existing-medical-conditions.aspx | Travel Insurance |
Essential Travel Ltd
Tel: 0845 803 5434
Web: http://insurance.essentialtravel.co.uk | Travel Insurance inc. pre-existing medical conditions
|
Freedom Insurance
Tel: 01223 454 290
Web: www.freedominsure.co.uk | Offers quality travel insurance for pre-existing medical conditions
|
Frio Wallet
Tel: 01437 741700 or 741755
Web: www.friouk.com
email: info@friouk.com | Range of travel wallets that keep medications cool |
Insurance Choice
Tel: 08432 276 505
Web: insurance choice
sales@insurancechoice.co.uk | Travel Insurance for those with pre-existing medical conditions. Over 250 conditions covered without medical screening. No upper age limits
|
Primary Travel Insurance
customerservice@primaryinsurance.co.uk
Web: www.primaryinsurance.co.uk | Travel insurance
|
World First
Tel: 0845 908 0161
Web: world first | Travel insurance with medical conditions
|
Useful Contact Information 
