Links·         We cannot guarantee the information contained within these websites. They are suggestions of possible further advice, support or contact.·         Just click on the blue writing and the website will open in a new window.·         Where more than one website is given it does not mean I place greater priority on this topic.·          Because the internet is a rapidly changing resource please let us know if ever you find a broken link or feel another website might be helpful if the topic is not already covered. ·         Thank you.  

You will find the information divided into different sections.

Home Care and Nutrition based links

Conditions and associated support links

and finally

General information including support in an emergency situation and areas such as benefit claims and housing. 

 HOME CARE COMPANIES·         These Companies provide a hospital to home service and pumps for patients on Parental or Enteral Feeding. ·         They are listed in alphabetical order for your convenience only 

 Abbott hospital to home service – enteral feeding and medical supplies

Bupa  pharmaceutical homecare service – medical supplies and Parenteral [IV/TPN] feeding

Calea hospital to home service Medical supplies and Parenteral [IV/TPN] feeding

Central Home Care  pharmaceutical homecare services

 Eden Medical Supplies and Parenteral [IV/TPN] feeding and medication

Fresenious Enteral and Parenteral Nutrition and supplies

Healthcare at home  Medical supplies, care and pharmaceutical supplies including Parenteral feeding

Hospira Pharmaceutical, medical supplies including infusion pumps, and Parenteral  [IV/TPN] feeding

Mckinley  IV infusion pumps

Novartis Specialist pharmaceutical company – enteral feeding

Nutricia – specialist enteral feeding products

Smiths Medical infusion pumps – Parenteral [ IV/TPN] feeding  

 Tyco health care – Medical Infusion Pumps – Kangaroo pump for enteral feeding

 Other links related to all aspects of Nutrition ·         We cannot guarantee the information contained within these websites. They are suggestions of possible further advice, support or contact. ·         These links are listed in alphabetical order to aid your search for information. ·         Sites about food and drink are included because many  people can still manage something to eat or drink.·         Because the internet is a rapidly changing resource please let us know if ever you find a broken link or feel another website might be helpful if the topic is not already covered. ·         Thank you.

PINNT   A UK based “support” network for all ages. A newsletter is provided for members. There is contact through a few regional groups. Run by volunteers who are either IV or enterally fed ,their carers and people who have been carers in the past. Links to National Organisations, work with Companies and other agencies aiming to  provide patient feedback.  Website in need of updating and work is currently in progress for a new launch later in 2009.

BAPEN

British Nutrition Foundation A registered Charity providing general information about Nutrition. 

E.S.P.E.NThis is the European Society for  Clinical Nutrition and Metabolism

 Grub!Grub 4 life is an interactive site which aims to give advice and information about nutrition from the early years and beyond. You need to register to access a lot of their information and support links. 

OLEY FOUNDATIONThe Oley Foundation is the American equivalent of PINNT 

P.E.N.GThis is the Parentral and Enteral Nutrition Group of the British Dietetic AssociationThis site is designed to provide healthcare professionals, dieticians and those with an interest in Parenteral and Enteral Nutrition with a comprehensive guide to the latest information from around the world.

Medical Conditions and disabilities ·         These are listed in alphabetical order for your convenience and not in order of severity or importance.·         Please note we cannot guarantee the accuracy of the information within these websites. ·         Having a condition does not mean you will always require an additional form of nutritional support. However, some people do and the information is for all members using this site.   ·         It might surprise you that there are so many varied conditions and topics covered here. We often do not think of other people and what they are living with. We might have also included some sites and help which you have not previously considered and hope this is useful.·         These are a only sample of the types of support available. Further links might be made through these websites and through search engine information. ·         Because a condition or topic has a lot of links listed we do not mean to show favour to any one condition or situation. ·         Some links contain information which you may not consider suitable for young people and children. We aim to cover the needs of as many enterally fed people and their families as possible.·         Because the internet is a rapidly changing resource please let us know if ever you find a broken link or feel another website might be helpful if the topic is not already covered. ·         Thank you. 

AchalasiaCore Charity fact sheet

 AllergiesAllergy UKAnaphylaxisEeosinphilic Conditions – children and adults with severe and multiple food and drug allergies 

Alzheimer’s Disease Alzheimer’s UK

Bladder and Bowel Bladder and Bowel foundation comprehensive information and support including information about urinary catheter care.

Childhood continence  Information and support

Cystitis and over active bladder information and support 

Cancer ·         There are a lot of sites about Cancer. ·         These are a few of many which PINNT members might find useful.·         Others can be found through your search engine  BowelKidneyMouth CancerOesophageal OvarianProstate General Cancer Support ChildrenMacmillan cancer care.  Marie Curie 

Cerebral palsy Living with cerebral palsy Scope 

Colitis and Crohns DiseaseNACC - The National Association for Colitis and Crohn's Disease 

 Cystic FibrosisCF Trust 

DiabetesDiabetes UK

 Downs SyndromeDowns Syndrome UKO 

Eating DisordersEAT 

Head InjuriesHeadway

Heart ConditionsBritish Heart Foundation 

Hirschsprungs DiseaseFact sheet  

Multiple SclerosisMS Society

 Myasthenia GravisMG Association 

 Neurological – see also Head Injuries

BIBIC  British Institute for Brain Injured Children

 Parkinson’s DiseaseParkinson’s UK 

Premature and Sick BabiesBliss  - Information and support about premature, small and sick babies and their families.Tiny Life  further support for families. 

Stroke         If you think somebody has had a stroke please ACT  

Stroke Association

 Thyroid ConditionsThyroid Association 

Tracheo-Oesophageal FistulaTOFS

Looking for more general help? ·         We cannot guarantee the content of any websites listed.·         We have listed the websites in general groups with a broad topic heading.·         Subject headings are in alphabetical order for ease of use. ·         Where more than one website is given it does not mean I place greater priority on this topic or the needs of the people using the information.·          Some links contain information which you may not consider suitable for young people and children. We aim to cover the needs of as many PINNT members and their families as possible.·         Because the internet is a rapidly changing resource please let us know if ever you find a broken link or feel another website might be helpful if the topic is not already covered. ·         Thank you.

An urgent need to talk? Desperate, alone, cannot cope? At any time of the day or night please call the Samaritans 08457 90 90 90 or visit the website today. You can email for help via the website too. Please do not feel you have to struggle alone

.Alcohol Related problems    here or call 0845 769 7555  

 Advice Citizens Advice  will provide you with as much information and support they can about a range if issues. Also see their Advice Guide Site

.BenefitsTo check the up to date information about benefits and pensions please see the Department of Work and Pension’s website  or call your local benefits office,There is a separate section relating to money and benefit useful links and a guide to claiming Disability Living Allowance within my blog and webjam site site.

   Bereavement Cruse  Will support anybody affected by bereavement

Child Bereavement Support for all and Jeremiahs Journey. The second of these links is a regional support network, however there is a lot of helpful advice and provides signposting to other agencies and information.

Compassionate Friends also has valuable advice and a support helpline.

Stillbirth and neonatal death  Supporting anybody affected by the death of a baby.

WAY foundation provides support specifically for those who are widowed at a young age 

Merry Widow also provides support specifically for widows

.Winstons Wish provides valuable information for children and their families when a parent, brother or sister dies. 

Charity GrantsThere are many charities which might be able to provide grants or extra assistance.You can search regarding your specific needs at  turn2usThey also have a benefits calculator as most Charities cannot provide support for items and living activities which should be covered by Benefit payments.

 Children in need of supportBullying. Please do not suffer alone. Try and tell an adult you trust as soon as possible. Beat Bullying will help you see you are not alone and do not need to suffer anymore.

Childline Free internet Confidential support and advice about any issue  for all children at any time OR please call 0800 1111 to speak to somebody who can support and help you right away.  

Caring Again there are many sites which will provide you with help and support. If you do not find what you are looking for here and in the benefits section please use your search engine. Young carers might find it helpful to talk to a teacher or another adult they can trust. Childline will also give you additional support and give you help with finding the correct help for your situation. Never feel you are alone. Also links such as the Young Carers might help. Do not struggle alone. Ask for help – it is there for you.

Costs of health care including prescriptionsNHS health costs are explained here and you will be able to see if you can claim help with costs such as prescription charges and other associated health costs such as eye sight tests and dental care.

Department of Health This site provides a lot of information about UK Health care

Elderly peopleAge Concern – information, day care services and support

Help the Aged – information support , shop and campaigns.

Equipment There are too many internet and “helping hands” shops to mention! If you require advice on the correct equipment to purchase or how to use a piece of equipment please contact a member of your health care team or  Occupational Therapist 

 Expert Patient Programme

The Expert Patient Programme is a free NHS-based self-management training programme giving people living with any long-term chronic condition the confidence, skills and knowledge to look at ways of possibly managing their condition better and be more in control of their lives on a day-to-day basis.

  Family Life  Contact a family  For all family members with a child with any disability. Includes free phone helpline and downloadable information and advice. 

Disabled Parenting Network – for parents; those hoping to become parents and their families.. Includes free phone telephone support.

Family Break up’s are not your fault. Support for all. 

Grandparent’s information and advice

One Space and  1parentfamilies {gingerbread] providing support for single parents

Parent Line Plus provides comprehensive support and information links

Relate Advice on relationships, face to face, online or by phone.

Siblings  Support and information for Brothers and Sisters of Disabled Children and Adults.

Twins and multiple births  comprehensive support and information for all Healthcare Commission The Health Care Commission is the Independent inspection body for both the NHS and independent healthcare with a wide range of responsibilities, all aimed at improving the quality of healthcare. You can find out how your local care services are rated here.  

 Hobbies and InterestsCarers go free Some local attractions have a concessionary rate for carers. This is ,however , often only for people who are needing support because of pushing a wheelchair. It is worth asking and checking the website of the place you are hoping to visit too!  

Cinema Card – This is a card for people who qualify for a person to accompany them to the Cinema free of charge. Fee payable on application

Further Education Check with your local Council and see if there are any leisure or interest courses available. Sometimes there are concessionary rates for people claiming certain benefits.Studying from Home – There are many courses and links online so search for the subject you are interested in.

Also the  Open University and other correspondence colleges might interest you. You do not have to complete a full degree and can study for general interest purposes!

Library Services. Check with your local Council for availability. Sometimes concessionary rates are payable for the loan of CD’s and talking books if you have a disability.

Local Services Cards. Some local Councils have a “loyalty Scheme” Card for people in their residential area enabling you to acquire discount from goods and services listed in a directory. 

Theatre – check with the individual theatre to find out if there are concessions for groups, disabled people and their carers or families and students.

Toy Library  Brilliant Source of play equipment and support. Contact link for information about local services.

 Hospice Care Association of Children’s Palliative Care   ACT is the only organisation working across the UK to achieve a better quality of life and care for every life-limited or life-threatened child or young person and their family.

Children’s Hospice UK General Information about the Hospice care available for children in the UK. Each Hospice has its own website. In addition to this your local child’s care team will support and advise you. 

 Finding a Hospice  this is some basic information about hospice care. Your medical team will support and advise you on the local services and care options. 

 Housing Shelter or your local Council will be able to provide you with advice and information

 Long Term Medical ConditionsNational Voices  

National Health ServiceThis NHS site provides a vast array of information about your health care needs, ways of staying healthy and where to seek help too.

 National Institute of Clinical Excellence

NICE is an Independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.

 NHS DirectInstant help via 0845 4647or the website for information support and advice relating to medical issues.  In the case of a major emergency requiring immediate attention call 999 and ask for the paramedics  

 Road Crashes  Road Peace give specific support after a crash giving practical and emotional support. They specifically ask that you do not call it an “accident”. Thank you. 

 Residential and Nursing Home CareCommission for Social Care Inspection reports are an excellent way of finding out about residential and nursing care homes and care services. Your Local Council or Social Worker will also be able to provide you with information about your area and service provision, costs and payments as will the CAB, Age Concern and Help the Aged. 

Sexual Health and Pregnancy

Disabled Parenting Network.  This network is for parents, those hoping to become parents and their family or friends. Includes free phone telephone support

.RUThinking ?       Providing information about sexual health for the 12- 18 age group and Brook providing comprehensive support up to the age of 25

National Childbirth Trust  comprehensive information and support network.

  Travel

Blue Badge Scheme  - parking badge for people with disabilities.

Bus Travel. Providing information about the Concessionary bus travel scheme for the over 60’s and eligible disabled people. 

Coach Travel Information offers and timetables

Community Transport – you will find more relevant information from your own City/Town Council website or Town Hall.

Flying – contact your travel Company for specific advice.

Hospital Car Service. This is a scheme which does not have a National Website. Assistance is given to people with severe disabilities and certain conditions to enable them to attend hospital appointments. Your GP Surgery or hospital departments will be able to advise you.

Hospital Travel Costs  Assistance with the costs of travelling to hospital appointments for people who qualify for certain means tested benefits or people with a low income.

Railcard for people with disabilities and a separate one for families

Shopmobility check to see if you have a shopmobility office near to wherever you are visiting. Hire of powered chairs and scooters for a nominal charge. Taxi card. This is one scheme which does not have a National Website. Check with your local Council to see if there is one operating in your area. You usually have to have severe mobility impairments and be in receipt of disability related benefits to qualify.

Money and Benefit ClaimsBenefit claimsHow to claim?  Dept of work and pensions [DWP] provide links to the Direct Gov Site.  This will provide you with up to date information, contact numbers and addresses. You can also download some benefit claim forms or claim online in some cases too.

Other help with claiming benefits

a2b is an organisation based in Northern Ireland. Specifically giving help to people of retirement age.

Benefits and work provide comprehensive information and support along with training and campaigns regarding benefit claims.

Citizens Advice provide comprehensive support on a range of issues including benefit claims and completion of claim forms.

 When things are not quite as you think they should be   DWP