For everyone concerned; the patient, family, friends and health care professionals Mesothelioma is perhaps the most challenging of all cancers. Mesothelioma is preventable, difficult to diagnose and treat, debilitating and incurable.
Mesothelioma UK is a free, vital, specialist, support and educational resource center.
There has been very little research carried out into how best to treat Mesothelioma, resulting in a severe lack of clinical evidence. This has led to a variation in opinion amongst healthcare professionals about what treatments should be offered to Mesothelioma patients. Treatments available do not offer a cure and survival is usually measured in months rather than years.
Unlike other more common cancers most GP's and community nurses will never care for a patient with mesothelioma and outside of specialist centres, hospital doctors and nurses rarely come into contact with the disease. Yet perhaps more so than with other types of cancer, when Mesothelioma enters an individual's life either as a patient, family member, or friend they have a desperate need for up to date information about the best treatments, the benefits these can offer, where to access treatment, how to control and cope with pain and breathlessness, prognosis, survival and how to maximise their quality of life.
Advice about appropriate local and national services is also necessary to ensure patients and their families are completely supported throughout the illness and beyond. Being an industrial disease there are complex benefits and legal entitlements that need to be understood and claimed for.
This is why Mesothelioma UK exists.
The Resource Centre
Mesothelioma UK is a resource centre dedicated to Mesothelioma. The centre co-ordinates communication and information about everything relevant to mesothelioma throughout the UK. We support any initiative that seeks to improve the life and experiences of mesothelioma patients and their carers.
Our team includes a Consultant Nurse, Specialist Mesothelioma Nurses, a Helpline Assistant, a Fundraising & Marketing Manager and an Operational Manager. The phone line is open from 08.30-16.30 hours Monday to Friday except bank holidays. The phone line and e-mail receive over 1500 contacts a year and this is steadily rising. The Newsletter is circulated to more than 1,760 contacts 4 times a year including healthcare professionals, known Asbestos/Mesothelioma Support groups, patient representative groups in the UK, and including 200 patient and carers and all members of the National Lung Cancer Forum for Nurses (NLCFN).
Our aim is to fund Mesothelioma Specialist Nurses in remote or high incidence areas around the UK so that anyone affected by mesothelioma has access to specialist knowledge and care.
All our services are free!
We provide information and support for people affected by Mesothelioma. We have a national free phone helpline (0800 169 2409) that provides access to impartial, accurate and relevant advice specific to mesothelioma for patients, carers and health care professionals. Callers to the helpline can access specialist nurse clinical advice, booklets and factsheets and can also be put in touch with local sources of information and support including, for patients and carers, contact with their local nurse specialist and local or nearest support group (where available). For health care professional's we organise numerous training and educational events, regular news bulletins, have established a National Mesothelioma Nurse Action Team and generally support health care teams in the management of Mesothelioma patients. We collaborate with all other interested parties to raise awareness about Mesothelioma and the dangers of asbestos and coordinate events surrounding Action Mesothelioma Day in July each year.
Initially funded by Macmillan Cancer Support, Mesothelioma UK now relies totally on voluntary donations to our own independent charity; Mesothelioma UK Charitable Trust.
“Meso UK has a much broader picture of what happens generally in the UK and that experience is priceless, particularly in our unusual circumstances.”
"At a very difficult time your knowledge and help is much appreciated........We have nowhere else to turn."
"Very informative. Gave me the information I wanted to know."
"An excellent service - sympathetic, courteous, prompt and very professional."
"Comforting to know the service is there."
(Family member) “I just wanted to say a big thank you to all of you at the charity; the charity has been so lovely to my family”
(GP Secretary) "Wonderful to know I have all this important and accurate information for our surgery.
"As a new carer I didn't know what to expect from the Patient and Carer Day conference, but I am so pleased I came not only for support along with my family, but learning so much information and understanding about mesothelioma and feeling not so alone. I left feeling very hopeful."
(Patient experience of Patient and Carer Day) " Patient input is extremely inspirational! Exercise session had a really good 'feel good' factor after quite a dark session prior to lunch!"
(Carer) “I would like to thank you for all you have done for my husband over the short time we have known you. I think the work you do is incredible, you are an inspiration and you were one of the few people who ever gave my husband and my self any hope in such dark times.