Society becomes more wholesome, more serene, and spiritually healthier, if it knows that its citizens have at the back of their consciousness the knowledge that not only themselves, but all their fellows, have access, when ill, to the best that medical skill can provide.— Aneurin Bevan 1942
Service user organisations
The Patients Association is a healthcare charity concerned that there should be better access to information for patients, equal access to high quality care, and the right for patients to be involved in all aspects of decision-making about their health care. http://www.patients-association.org.uk/
It’s worth bearing in mind that the Patients Association receives financial support and charitable donations from a range of multinational companies such as Pfizer, Boehringer Ingelheim, MSD, Grunenthal (pharmaceutical companies); Abbott (medical devices and technologies); and Nutricia (medical nutrition for all life stages including babies and breastfeeding mothers). This funding may or may not influence the nature of information they provide. For example, the Patients Association
- produced a report on the difficulties some care home residents might have with swallowing medicines: the report is supported by a grant from Rosemont Medicals (who produce liquid medicines);
- carried out a study of in-patient food, drink and meal service: the study was funded by Compass – suppliers of in-patient catering services (https://www.patients-association.org.uk/wp-content/uploads/2017/02/Patients-First-Full-Report.pdf)
- instigated, and acted as Secretariat for, a Parliamentary Inquiry into hospital-acquired infections and the increasing resistance of some infections to treatment. The Patients Association receives funding from Alere, a company that provides point-of-care diagnostic tests, aiming to avoid the over-use of antibiotics.
- produced a report on a nutrition check-list for patients and carers, funded by Nutricia, (https://www.patients-association.org.uk/wp-content/uploads/2016/12/The-Patients-Association-Nutrition-Checklist-Report-2016.pdf). The report gives a link to a website providing information on nutritional supplements and the costs of travel and accomodation for those attending meetings and developing the website were also met by a grant from Nutriciana. (http://malnutritionpathway.co.uk/link)
Carers’ UK is a charity that provides information and advice about caring, along with practical and emotional support for carers. It also campaigns to improve life for carers, and influences policy makers, employers and service providers on ways of improving carers’ lives.
See also the Carers Trust that co-ordinates local carers’ centres.
Disability Rights UK, an umbrella organisation, led by people with disabilities with expertise in supporting people who want to take control of their lives through ‘independent living’ :
AgeUK is an umbrella organisation, providing a huge range of information and support for older people. Their website includes a very detailed summary of “your rights to healthcare.” This will be very useful background information if you, or others that you know, discover that your treatment options are being “rationed” or are no longer available.
AgeUK’s information will help you to be clear about what you are entitled to – and you will then be on stronger ground if you want to challenge any decision about your healthcare.